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Papers on Housing and Independent Living [1974-1978] [1]
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administrative marker by the George Bush Presidential
Library Staff.
Record Group/Collection: Donated Historical Materials
Collection/Office of Origin: Frieden, Lex, Collection
Series:
Printed Materials
Subseries:
Reference Materials
OA/ID Number:
52144
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52144-003
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Papers on Housing and Independent Living [1974-1978] [1]
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BIBLIOGRAPHY
ON
SUPPORTED LIVING CONDITIONS
March 1978
compiled by:
REHABILITATION INTERNATIONAL
Information Service
c/o STIFTUNG REHABILITATION
Postfach 101 409
6900 Heidelberg 1
FEDERAL REPUBLIC OF GERMANY
- 2 -
Bibliographies
001 Fink, Ch. / Manus, M.R.
Housing for the Disabled Persons: Annotated Bibliography
Hofstra University, Dept. of Special Education and
Rehabilitation - May 1975
prepared for and available from:
United Cerebral Palsy Association,
66 East 34th Street, New York, N.Y. 10016, USA
Physically Handicapped
002
:
Apartment Building for Handicapped Persons
(North Dakota, USA)
Phys Ther, May 1974., 54:5:523
003
---
Berkeley Active in Rights for Handicapped
Phys Ther, Apr. 1977, 57:4:437
004
---
Collective forms of living may be an alternative
to institutions
in: Beckman, M. - Building for Everyone, Stockholm
1976, pp. 103-105
005
---
Comunità famiglia Opicina
Distrofia Muscolare, Feb. Apr. 1977, 16:53:4-5
006
Conference on housing and related support services
for the physically handicapped
crcd rehab dig, Aug. -Oct. 1975, 7:1:18
007
---
Housing and Home Services for the Disabled in the U.S.
Rehab Gazette, 1972, 15 :6-12
- 3 -
008
Housing and Home Services for the Disabled in the U.S.
Rehab Gazette, 1973, 16:38-45
009
---
Housing and Residential Services - Check List -
Rehab Aust, Jan. 1976, 13:1:11
010
---
Die individuelle Betreuung Behinderter und Kranker
durch Zivildienstleistende.
- Merkblatt des Bundesministers für Arbeit und
Sozialordnung -
Rehab (Stuttg.), Mai 1977, 16:2:78-80
011
---
"Living together" plan succeeds
Spastics News, Oct. 1977, 3-4
012
---
Manitoba Housing Kiwanis Centre of the Deaf
no date
Available from: Manitoba Housing and Renewal Corporation,
2100-185 Smith Street, Winnipeg, Manitoba R3C 3G4,
Canada
013
---
Planned Cheshire in the U.S.
Rehab Gazette, 1976, 19:31
014 ---
Tax Deductions Allowed -
IRS Attendant Ruling May Set Precedent
Accent Living, winter 1975, 20:3:68-69
015 Baer, B.
Bureaucratic Disincentives
Rehab Gazette, 1976, 19:29-30
- 4 -
016 Bednar, M.
Architecture for the Handicapped in
Denmark, Sweden and Holland
Publications Distribution Service,
615, East University, Ann Arbor, Michigan 48106, USA
1974
017 Berrol, S.
The Berkeley Experience in Independent Living
in: Abstracts, 13th World Congress of Rehabilitation
International, Tel Aviv, Israel, June 13-18, 1976, p.15
018 Brattgard, s.-o.
Integrated Living for the Severely Disabled
Rehab World, Oct. 1975, 1:2:22-28, 32
019 Brattgard, s.-o.
Varieties of Living for the Severely Disabled
in: Abstracts, 13th World Congress of Rehabilitation
International, Tel Aviv, Israel, June 13-18, 1976, p.20
020 Brattgard, s.-o. et al.
Wohnung und Pflege für schwer Bewegungsbehinderte
Rehab (Stuttg.), Nov. 1972, 11:4:223-233
021 Brohm, J. / Juster, K. (Bearb.)
Die Wohnsituation der Körperbehinderten in der
Bundesrepublik Deutschland
Schriften "Bau und Wohnforschung" des Bundesministers
für Raumordnung, Bauwesen und Städtebau, Heft Nr. 017
1976
022 Brown, R.G.A.
Scotland's Thistle Foundation:
A Traditional Sheltered Environment
Rehab World, winter 1976/77, 2:4:30-32
023 Bryce, T.
Housing for the Handicapped
Rehab World, July 1975, 1:1:7-10, 28
- 5 -
024 California State Department of Public Health,
Bureau of Chronic Diseases
Residential Care Needs - A report to the California
State Legislature; Handicapped Persons Pilot Project,
Jan. 1969
Available from:
Bureau of Chronic Diseases, 2151 Berkeley Way,
Berkeley, California 94704, USA
025 Canadian Rehabilitation Council for the Disabled
A National Conference on Housing and Essential Support
Services for the Physically Disabled
Edmonton, Alberta, Dec. 9-10, 1976
Canadian Rehabilitation Council for the Disabled,
Suite 2110, One Yonge Street, Toronto, Ont. M5E 1E8,
Canada
026 Cardall, E.
San Diego's Plan for Self-Support
Soc Rehab Rec; Mar. 1974, 1:3:12-16
027 Catterson, A. / Howell, S.
Mental Health / Ottawa's Group Homes Project
Can Ment Hlth, Mar. 1976, 24:1:42-44
028 Central Council for the Disabled
Interim Report of the Working Party on
Housing for Disabled People
London, Dec. 1974
Available from:
Royal Association for Disability and Rehabilitation,
25, Mortimer Street, London W1N 8AB, England
029 Chouinard, E.
Family Homes for Adults
Soc Rehab Rec, Feb. -Mar. 1975, 2:2:10-15
030 Coletti, E.J.
Meeting Human Needs Thru Self Help
A Visit to C.I.L. Center for Independent Living in
Berkeley, California
Am Rehab, May-June 1977, 2:5:19-25
- 6 -
031 Cook, C.
Mainstreaming the Handicapped
in: Abstracts, 13th World Congress of Rehabilitation
International, Tel Aviv, Israel, June 13-18, 1976, p.32
032 Dickman, I.R.
Help at the Door
A Manual on Home Services for Individuals with
Cerebral Palsy and Other Developmental Disabilities
Dec. 1975
Available from:
United Cerebral Palsy Associations, Inc.
Professional Services Program Department
66 East 34th Street, New York, N.Y. 10016, USA
033 Dickman, I.R.
Independent Living: New Goal for Disabled Persons
(abstract: Rehab Lit, Sept. 1975, 36:9:292)
Public Affairs Pamphlet No. 552, 28 pp.
Available from:
Public Affairs Committee, Inc.,
381 Park Ave. South, New York, N.Y. 10016, USA
034 Dickman, I.R.
No Place like Home
Alternative Living Arrangements for Teenagers
and Adults with Cerebral Palsy
1975
Available from:
United Cerebral Palsy Associations, Inc.,
66 East 34th Street, New York, N.Y. 10016, USA
035 Exner, G.
Marburger Studentenwohnheim
in: Jahrbuch der Deutschen Vereinigung für die
Rehabilitation Behinderter e.V., 1969/70, S. 153-154
Available from:
Deutsche Vereinigung für die Rehabilitation Behinderter e.V.,
Friedrich-Ebert-Anlage 9, D-6900 Heidelberg 1
036 Falta, P.
Freedom to Live and "Integrated Living" in Action
HABITAT, 1975, 6
- 7 -
037 Falta, P. / Cayonette, G.
Social Chance through Integrated Housing
- Resume of Final Report:
Demonstrating project to implement "Integrated Housing"
crcd rehab dig, Aug.-Oct. 1977, 8:4:4-6
038 Faughnan, P.
The Dimensions of Need
A Study of Members of the Irish Wheelchair
Association
(chap. 3: The Living Situation - Housing, pp. 24-33)
Available from:
Irish Wheelchair Association,
Arus Chuchulain, Blackheath Drive,
Clontarf, Dublin 3, Ireland
039 Frieden, L.
Community and Residential Based Housing
White House Conference on Handicapped Individuals, USA
May 1976, unpublished
040 Gaylord, R.
Communities for the Handicapped
Built Environment Research Group, School of Environment,
Polytechnic of Central London, London, England, 1974
041 Goldsmith, S.
Designing for the Disabled
(chap. 1.16: Housing alternatives to institutions,
pp. 89-100
chap. 1. .17: Independent Housing, pp. 101-113)
3rd revised edition,
London: RIBA Publ. Ltd.
1976
042 Goodwill Industries of America
Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 1974
Health and Education Resources, Inc.,
9650 Rockville Pike, Bethesda, Maryland 20014, USA
043 Gray, R.C.
Housing and Residential Accomodation
Physiother, Aug. 1974, 60:8:239-243
- 8 -
044 Greenstein, D. / Gueli, C. et al.
Housing for the Handicapped in Europe
hud international, May 1976,
Information Series 38,
045 Gries, J.
Kap. 3.2. Wohnform
in: Stemshorn, A. (Hrsg.)
Bauen für Behinderte und Betaqte
Stuttgart: Koch, 1974
S. 76-80
046 Holzman, J.
Apartment Integration
crcd rehab dig, fall 1976, 8:1:14
047 Hußlein, J.
Gemeinschaftsanlage für Schwerkörperbehinderte
Ein überregionales Modell entsteht in München
(Pfennigparade e.V.)
Rehab (Stuttg.), Febr. 1969, 8:1:36-39
048 Jeffrey, D.
Highland Heights
Fall River, Mass.
in: Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 10-12, 1974,
pp. 21-22
( for complete address see ref. no. 042)
049 Kendall, A.B.
How Big is Too Big
Rehab Gazette, 1976, 19:28-29
050 Klapwijk, A.
"Het Dorp" - A Village for the Disabled
in: Proceedings of the Eleventh World Congress
of Rehabilitation International, Dublin, Ireland.
Sept. 14-19, 1969, pp. 453-457
051 Kuldschun, H.
Neue Wohnformen für alleinstehende Behinderte
als Alternative zum Heimaufenthalt
Innere Mission, 1972, 62:3/4
- 9 -
052 Kuldschun, H./ Rossmann, E.
Planen und Bauen für Behinderte
(Kap. 3.35: Sonderwohnformen, S. 57-61;
Kap. 3.36: Offene Hilfen und Sozialzentren,
S. 61-63)
Stuttgart: Deutsche Verlags-Anstalt
1974
053 Kuldschun, H.
Wohnungsbau für Körperbehinderte und alte Menschen
als gesellschaftliche Rehabilitationshilfe
Rehab (Stuttg. ) Aug. 1971, 10:3:160-173
054 Laurie, G.
Housing / Independent Living:
Housing and Home Services
Rehab Gazette, 1976, 19:27-28
055 Laurie, G.
Housing and Home Services for the Disabled
Guidelines and Experiences in Independent Living
New York: Harper and Row, 1977
056 Leonard, E.
Disabled Housing in Scandinavia - Part I
Performance, Oct. 1975, 26:4:6-9
057 Leonard, E.
Disabled Housing in Holland - Part II
Performance, Nov. Dec. 1975, 26:5/6:22-25
058 Lith, J.
Experience Gained With Homes for Severely Disabled
Unmarried Persons
in: ISRD - Proceedings of the Tenth World Congress,
Wiesbaden, Germany, Sept.11-17, 1966, pp. 46-47
- 10 -
059 Londahl, J.
Utilizing Sec. 23 to Provide Housing for the
Handicapped in Portland, Oregon
in: Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 10-12, 1974,
pp. 26-27
(for complete address see ref.no. 042)
060 Loring, J.
International patterns of resident care for the
multihandicapped
(abstract: Rehab Lit, May 1972, 33:5:152)
crcd rehab dig, winter 1971/72, 3:3:11-14
061 Lufburrow, W.
Independence Hall
Houston, Texas
in: Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 10-12, 1974,
p. 24
(for complete address see ref.no. 042)
062 Lummer, K. / Hartz, B. et al.
(Hrsg. : VHS-Kurs 60113)
Dokumentation: Wohnsituation Behinderter in
Düsseldorf, no date
Available from:
The author, Schumannstr. 2
D-4000 Düsseldorf
063 Massachusetts Association of Paraplegics, Inc.
Housing Needs of the Handicapped
1970
Available from: Massachusetts Association of
Paraplegics, Inc.
P.O. Box 48, Bedford, Mass. 01730, USA
064 McGuire Thompson, M.
Housing and Handicapped People
President's Committee on Employment of the Handicapped,
Washington, D.C. 20210, USA, 1976
- 11 -
065 McGuire Thompson, M. / Noakes, E.H.
Housing? Or Housing Options?
Rehab Lit, Apr. 1977, 38:4:106-109
066 Nederlandse Centrale Vereniging ter Bevordering
van de Revalidatie
Beschermende Woonvormen
Deelrapport 1 van het studierapport
"De huisvesting van de minder-valide"
s'Gravenhage, 1968
Available from:
Netherland's Society for Rehabilitation,
Postbus 9115, s'Gravenhage, The Netherlands
067 Netherland's Society for Rehabilitation
Sheltered Living Conditions
1970
Available from:
Netherland's Society for Rehabilitation.
Postbus 9115, s'Gravenhage, The Netherlands
068 Pagano, N.A., Jr.
Independent Living for Handicapped People:
A Brooklyn Approach
in: Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 10-12, 1974,
pp. 24-26
(For complete address see ref.no. 042)
069 Penton, J. / Barlow, A.
Handbook of Housing for Disabled People
Available from:
Royal Association for Disability and
Rehabilitation,
25 Mortimer Street, London W1N 8AB, England
070 Rice, D.M.
Small Group Living Experiment
on in San Diego
paraplegia news, June 1975, 28:321:34
- 12 -
071 Saxer, G.
Design for Living for the Handicapped with
Severe Physical Disabilities and Lacking
Any Special Advantages
in: Proceedings of the Eleventh World Congress of
Rehabilitation International, Dublin, Ireland,
Sept. 14-19, 1969, pp. 74-77
072 Schiff, Y.
Rehabilitation and Integration of Severely
Handicapped Youth into the Community - An
Alternative to Institutionalization
in: Abstracts, 13th World Congress of Rehabilitation
International, Tel Aviv, Israel, June 13-18, 1976, p. 176
073 Stiftung "Het Dorp"
"Het Dorp" (brochure)
Arnhem, no date
Available from:
Het Dorp, Heijenoordseweg 150,
Arnhem, The Netherlands
074 Stohl, D.J.
Preserving home life for the disabled
(program developed by the Oklahoma Department of
Institutions, Social and Rehabilitation Services)
(abstract: Rehab Lit, Nov. 1972, 33:11:344)
Am J Nursing, Sept. 1972, 72:9:1645-1650
075 Symons, J.
Residential accomodation for disabled people
(abstract: Rehab Lit, Sept. 1975, 36:9:290)
May 1974
Available from:
Center on Environment for the Handicapped,
24 Nutford Place, London W1H 6AN, England
076 Twichell, S.
New Horizons Manor
Fargo, North Dakota
in: Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 10-12,1974,
pp. 23-24
(for complete address see ref.no. 042)
- 13 -
077 U.S. Architectural and Transportation Barriers
Compliance Board
Freedom of Choice, - Report to the President and
Congress on Housing Needs of Handicapped Individuals
Vol. I and II,
Washington, D.C., Oct. 1975
Available from:
U.S. Architectural and Transportation
Barriers Compliance Board,
Washington, D.C. 20201, USA
078 U.S. Department of Housing and Urban Development
Housing for the Physically Impaired
A Guide for Planning and Design
1968
Available from:
Superintendent of Documents,
U.S. Government Printing Office,
Washington, D.C. 20402, USA
079 Walther, V.
Betreuung alleinstehender, unselbständiger
Querschnittgelähmter durch Zivildienstleistende
Rehab (Stuttg.), Mai 1977, 16:2:76-77
080 Williams, A.D.
Housing (Design for Living
Mexican Style:
A new housing project in Guadalajara)
Rehab Gazette, 1968, 11:72-73
- 14 -
Mentally Handicapped
081
---
Housing for mentally handicapped people:
the role of housing authorities
design spec needs, May-Jul. 1977, 13:6-10
082 ---
Modell einer differenzierten Wohnanlage
Lebenshilfe, Juli/Sept. 1975, 14:3:157-163
083 ---
Pennsylvania Plans 800 In Community Living
Am Rehab, Nov. -Dec. 1976, 2:2:2
084 ---
Das Wohnheim für geistig Behinderte
- Empfehlungen zur Planung, Errichtung, Organisation
und Führung eines Wohnheimes -
Lebenshilfe, April/Juni 1970, 9:2:99-104
085 ---
Wohnstätten für erwachsene geistig behinderte Menschen
Grundsätze für Aufbau und Entwicklung
Lebenshilfe, April/Juni 1975, 14:2:84-85
086 ---
Ein zweites Zuhause für geistig behinderte Erwachsene
behinderte kind (dbk), Juli 1975, 12:4:239-240
087 Ames, Th.R. / Levy, J.M.
The hostel: plans and purposes
J Rehab, May-June 1973, 9:3:28-30
- 15 -
088 Andrews, R.J.
The mentally retarded: community provision and
professional responsibility
(abstract: Rehab Lit, Sept. 1972, 33:9:280)
Aust J Ment Retard, Mar. 1972, 2:1:4-15
089 Anglin, B.
To Nebraska With Thanks
(facilities for MR semi independent living;
ENCOR-Eastern Nebraska Community Office of Retardation)
Ment Retard (Can), Apr. 1973, 23:2:2-9
090 Berkiansky, H.A. / Parker, R.
Establishing a Group Home
Ment Retard, Aug. 1977, 15:4:8-11
091 Berking, G.
Die Wohnstättenarbeit in Braunschweig
- Wohnen in kleinen Gruppen -
Lebenshilfe, Jan./März 1977, 16:1:4-6
092 Birenbaum, A. / Seiffer, S.
Resettling Retarded Adults in a Managed Community
New York: Praeger, 1976
093 Black, B.J.
Rehabilitative and Community
Support for Mental Patients
Rehab Lit, Feb. 1976, 37:2:34-40
094 Deutsch, I.
A Transitional Approach to Community Residential
Programming for Retarded Persons
An Experience
in Pennsylvania
in: Abstracts, 13th World Congress of Rehabilitation
International, Tel Aviv, Israel, June 13-18, 1976, p.46
095 Eder, K.R.
Wohnstätten und Anstalten -
Partner in der Hilfe für geistig Behinderte
Lebenshilfe, Jan./März 1977, 16:1:12-16
- 16 -
096 Environmental Design Group
Design Guidelines -
Intermediate Care Facilities for the Mentally Retarded
Department of Mental Health, Massachusetts, USA
August 1976
Available from:
Environmental Design Group,
14 Arrow Street, Cambridge, Mass. 02138, USA
097 Environmental Design Group
Mental Health / Retardation Planning -
community-based mental health services and facilities
for mentally retarded
Cambridge, Mass., no date
Available from:
Environmental Design Group,
14 Arrow Street, Cambridge, Mass. 02138, USA
098 Fanning, J.-W.
A common sense approach to community
living arrangements for the mentally retarded
Springfield, Ill.: Thomas, 1975
099 Gladden, J.
Sheltered Living Programs at the Lubbock State School
in: Proceedings of a Conference on "Extended Living
for the Mentally Retarded"
Texas Tech. University, Nov. 12-15, 1972, p.31-40
Available from:
Texas Tech. University,
Research and Training Center in
Mental Retardation,
P.O. Box 4100, Lubbock, Texas 79409, USA
100 Granger, B.P.
Developing Community-Based, Small-Group Living
Programs in Rehabilitation Services
Rehab Lit, June 1975, 36:6:170-174
101 Grunewald, K.
Community Living for Mentally Retarded Adults
Current Sweden, May 1977, no. 159
- 17 -
102 Grunewald, K.
Group Homes - Options for Progress
Ment Retard (Can), Apr. 1975, 25:2:15-18
103 Haak
Organisations- und Entwicklungsplan für ein Wohnheim
Lebenshilfe, April/Juni 1971, 10:2:105-109
104 Institute for Research into Mental and
Multiple Handicap (IRMMH) -
Library Information Service
Group homes and community living arrangements for
the mentally retarded adult; a select reading list
London: IRMMH, 1975
105 Kinkaide, P.S..
Edmonton's Developing Continuum of Residential Resources
Ment Retard (Can), Apr. 1977, 27:2:8-19
106 Lupke, K.v.
Soziale Integration geistig Behinderter im Bereich des
Wohnens - Gedanken zum Wohnstättenbau, zur Stadtgestaltung
Gemeinwesenarbeit
Lebenshilfe, Jan./März 1973, 12:1:1-7
107 McLaren, N.
Apartment living in Brantford, Ont.
Ment Retard (Can), Apr. 1977, 27:2:19-20
108 National Association for Retarded Citizens
The Right to Choose
Available from:
N.A.R.C. Publication Dept., P.O. Box 6109,
Arlington, Texas 70011, USA
109 Nooe, R.M.
Toward Independent Living for the Mentally Retarded
Soc Work, Jul. 1975, 20:4:286-290
- 18 -
110 Northern Virginia Association for Retarded
Citizens (NVARC)
Developing and Operating Group Homes for the
Developmentally Disabled of Virginia
Available from:
NVARC, 105 E. Annandale Road, Suite 200A,
Falls Church, Virginia 22046, USA
111 O'Connor, G.
Home is a good place
A national perspective of community residential
facilities for developmentally disabled persons
Washington, D.C., 1976
Available from:
American Association of Mental Deficiency,
5201 Connecticut Ave., N.W.,
Washington, D.C. 20015, USA
112 Piltz, B. / Roach, C.
Aspects of Rehabilitation of Mentally Retarded
Residents in State-Sponsored, Community Facility
Am Arch Rehab Ther, Sept. 1972, 20:3:77-84
113 Shapiro, H.
Circle of Homes: group homes for the retarded
in Cuyahoga
Ment Retard, June 1973, 11:3:19-21
114 Shearer, A.
No place like home?
Hostels and homes for mentally handicapped adults
Aust Citizen Limited, Aug. 1976, 147-161
115 de Silva, R.M. / Faflak, P.
From Institution to Community
Ment Retard, Dec. 1976, 14:6:25-28
116 Soforenko, A.Z. / Sommer, D.K.
Connecticut Regional Mental Retardation Program
in: Proceedings of a Conference on "Extended Living
for the Mentally Retarded", Texas Tech. University,
Nov. 12-15, 1972, p. 17-22
(for complete address see ref.no. 099)
- 19 -
117 Soforenko, A.Z. / Sommer, D.K.
Group Homes in Connecticut: Genesis and Program
in: Proceedings of a Conference on "Extended Living
for the Mentally Retarded", Texas Tech. University,
Nov. 12-15, 1972, p. 23-30
(for complete address see ref.no. 099).
118 Thomas, J.K.
An Overview of Washington State's Group Homes
for Developmentally Disabled Persons
in: Proceedings of a Conference on "Extended Living
for the Mentally Retarded", Texas Tech. University,
Nov. 12-15, 1972, p.5-11
(for complete address see ref.no. 099)
119 Tomlinson, P.B. / Cumming, J.
Coast Foundation Apartment Project
Can Ment Hlth, Mar. 1976, 24:1:23-28
120 Wagner, M.I.
Community Living Centers
Farmington, Michigan
in: Proceedings of a National Conference on Housing
and the Handicapped, Houston, Texas, Sept. 10-12, 1974,
p. 27-28
(for complete address see ref.no. 042)
- 20 -
Narcotic Addicts
121 Carrick, R.W.
Southmore House: Use of a "Halfway" House and
Integrated Community Approaches in the Posthospital/
Correctional Institution Rehabilitation of
Narcotic Addicts
in: Rehabilitating the Narcotic Addict,
Report of Institute of New Developments in the
Rehabilitation of the Narcotic Addict,
Fort Worth, Texas, Feb. 16-18, 1966, p. 219-224
Texas Christian University, Institute of
New Developments in the Rehabilitation
of the Narcotic Addict, Fort Worth, Texas
122 Geis, G.
The East Los Angeles Halfway House:
Two Years Later
in: Rehabilitating the Narcotic Addict,
Report of Institute on New Developments in the
Rehabilitation of the Narcotic Addict,
Fort Worth, Texas, Feb. 16-18, 1966, p. 231-237
123 Shelley, J.A.
Daytop Lodge - A Two Year Report
in: Rehabilitating the Narcotic Addict,
Report of Institute on New Developments in the
Rehabilitation of the Narcotic Addict,
Fort Worth, Texas, Feb. 16-18, 1966, p.239-246
- 21 -
Full titles of journals and publishers
Accent Living
= Accent on Living
Cheever Publishing, Inc.
P.O. Box 700
Gillum Road & High Drive
Bloomington, Ill. 61701
Am Arch Rehab Ther
= American Archives of Rehabili-
tation Therapy
The American Association for
Rehabilitation Therapy, Inc.
W. 32 Ferndale Road
Paramus, N.J. 07652
Am J Nursing
= American Journal of Nursing
Am Rehab
= American Rehabilitation
(formerly: Social and Rehabili-
tation Record)
(official publication of the
Rehabilitation Services
Administration
U.S. Department of Health,
Education, and Welfare)
Superintendent of Documents
P.O. Box 1533
Washington, D.C. 20402
Aust Citizen Limited
= Australian Citizen Limited
(Journal of the Australian
Association for the Mentally
Retarded)
Australian Citizen Limited
P.O. Box 91
Brighton, South Australia 5048
- 22 -
behinderte kind (dbk)
= das behinderte kind (dbk)
(Organ der Bundesarbeitsgemein-
schaft "Hilfe für Behinderte" e.V.)
Rehabilitationsverlag G.m.b.H.
Kronprinzenstr. 67
D-5300 Bonn-Bad Godesberg
Can Ment Hlth
= Canada's Mental Health
Department of Supply and
Services, Publishing Centre
Ottawa, Ontario K1 A059
crcd rehab dig
= crcd rehabilitation digest
Canadian Rehabilitation
Council for the Disabled (crcd)
Suite 2110
One Yonge Street
Toronto, Ont. M5E 1E8
Current Sweden
= Current Sweden
Swedish Institute
Box 7072
S-10382 Stockholm
design spec needs
= design for special needs
Centre on Environment for the
Handicapped
126 Albert Street
London NW 1 7 NF
distrofia muscolare
= distrofia muscolare
Direzione Nazionale
Unione Italiana Lotta alla
Distrofia Muscolare
Via P.P. Vergerio 17
35100 Padova
- 23 -
hud international
= hud international
U.S. Department of Housing
and Urban Development
Washington, D.C. 20410
Innere Mission
= Die Innere Mission
Christlicher Zeitschriftenverlag
D-1000 Berlin 41
J Rehab
= Journal of Rehabilitation
National Rehabilitation Association
1522 K St., N.W.
Washington, D.C. 20005
Lebenshilfe
= Lebenshilfe
Bundesvereinigung "Lebenshilfe
für geistig Behinderte e.V."
Postfach 80
D-3550 Marburg 7
Ment Retard
= Mental Retardation
American Association on
Mental Deficiency (AAMD)
5101 Wisconsin Ave., N.W.
Washington, D.C. 20016
Ment Retard (Can)
= mental retardation /
déficience mentale
Canadian Association for the
Mentally Retarded
Kinsmen National Institute on
Mental Retardation Building
York University
4700 Keele St.
Downsview, Ont M3J 1P3
- 24 -
1
1.
paraplegia news
= paraplegia news
Paralyzed Veterans of America, Inc.
Editorial and Business Office
935 Coastline Drive
Seal Beach, California 90740
Performance
= Performance
The President's Committee
on the Employment of the
Handicapped
Washington, D.C. 20210
Phys Ther
= Physical Therapy
(Journal of the American Physical
Therapy Association)
Editorial Office
1156 15th St., N.W.
Washington, D.C. 20005
Physiother
= Physiotherapy
(The Journal of the Chartered
Society of Physiotherapy)
14 Bedford Row
London WC1R 4ED
Rehab (Stuttg.)
= Die Rehabilitation
Georg Thieme Verlag
Herdweg 63
Postfach 732
D-7000 Stuttgart 1
Rehab Gazette
= Rehabilitation Gazette
International Journal and
Information Service for the
Disabled
4502 Maryland Avenue
St. Louis, Missouri 63108, USA
- 25 -
Rehab Lit
= Rehabilitation Literature
National Easter Seal Society for
Crippled Children and Adults
2023 W. Ogden Ave.
Chicago, Ill. 60612
Rehab World
= Rehabilitation World
Rehabilitation International USA
(RIUSA)
Circulation Department
20 West 40th Street
New York, N.Y. 10018
Soc Rehab Rec
= The Social and Rehabilitation
Record (now: American Rehabilitation)
U.S. Department of Health,
Education, and Welfare
Social Rehabilitation Service
P.O. Box 1533
Washington, D.C. 20402
Soc Work
= Social Work
(Journal of the National Association
of Social Workers)
National Association of Social
Workers
Publication and business offices
49 Sheridan Ave.
Albany, N.Y. 12210
Spastics News
= Spastics News
The Spastics Society
Advertising & Publications Dept.
12 Park Crescent,
London W1N 4EQ
List of references with relevance to the United Kingdom
John Penton
1) Goldsmith, Sehoyn 'Designing for the Disabled'. 3rd Edition
R.I.B.A. publications, London, 1976 (+ 20).
2) D.O.E./H.D.D. Occasional Paper 2/74 "Mobility Housing'.
Department of the Environment, London, 1974. Free
3) D.O.E. Joint Circular 74/74 ' Housing for People who are
Physically Handicapped! Her Majesty's Stationery Office,
London, 1974, 6p.
4) D.O.E./H.D.D. Occasional Paper 2/75 'Wheelchair Housing'.
Department of the Environment, London, 1975. Free
5) D.O.E. Joint Circular 92/75 'Wheelchair and Mobility
Housing, Standards and Costs, Her Majesty's Stationery
Office, London, 1975, 11p.
6) Chesire County Council Department of Architecture 'Made
to Measure - Domestic Extensions and Adaptations for
Handicapped Persons', Chester 1974, + 1.00
7) Rudinger, Edith, 'Coping with Disablement' Consumer's
Association, 14 Buckingham St., London, 1974, + 2.00.
8) Fanon, Bernadette "So You're Paralyzed' Spinal Injuries
Association, London, 1975 (+ 2.00)
9) D.O.E./D.H.S.S./W.O. Joint Consultation Paper 'Adaptations
to Housing for People who are Physically Handicapped' Department
of the Environment, London, February 1976. Free.
10) Penton, John, 'Handbook of Housing for Disabled People'.
London Housing Consortium, West Group, London 1976. + 2.00.
11) English Tourist Board, 'Providing for Disabled Visitors',
London, 1977, Free.
12) Foott, Sydney, 'Handicapped at Home", Design Council, London,
1977, + 1.85.
13) Penton, John, Architects Journal, London. 32p. following issues:
Jan. 4, 1978 Design for elderly and handicapped people
(*see attached copy)
Jan. 29, 1975, Friendship House, Poole
Oct. 23, 1975, Housing for the Disabled, Coventry
14) Penton, John, 'The Use of the Underground System by People with
Impaired Mobility', London Transport, London, 1976. Free
15) Department of Urban Design & Regional Planning, Edinburgh
University, 'Planning for Disabled People in the Urban
Environment' Central Council for the Disabled, London
1969. + 2.00.
-
16) National Building Agency, 'The Disabled in Rehabilitation
Housing' Guidance for Housing Association, London, 1978. +1.
Housing for Disabled Persons: Annotated Bibliography
The Department of Special Education and Rehabilitation
of
Hofstra University
Charlotte Fink, M.A.
Muriel R. Manus, M.A.
Gerald I. Manus, Ph.D.
Prepared for:
United Cerebral Palsy Associations, Inc.
66 East 34th Street
New York, New York 10016
May, 1975
Ames, Thomas Robert and Levy, Joel. "The Hostel: Plans and Purposes."
Journal of Rehabilitation, May-June 1973 Vol. 39, No. 3 p. 28-30.
The authors feel that in order to obtain successful, rehabilitative work
experiences a person needs adequate social interactions and only by living
unassisted can you achieve this. A hostel could fill this need and some
have been established for mentally retarded and brain injured individuals.
some rooming features are described: dorm situations, shared apartments or
singles -- various levels of unctioning can be serviced.
Implications: The hostel idea is one of the newer independent living concepts.
They are geared, to a great extent, to younger handicapped populations and
provide community experiences within a therapeutic environment. They are
located near some type of care facility and for this reason they are most
suitable for the individual who may still need some medical attention.
Bayes, K. and Franklin, S. "The therapeutic Environment." Designing for the
Handicapped, London, 1971, p.18-25. from Mental Retardation Abstracts, Vol.9
The community for mentally retarded individuals described in this article pro-
poses a complex of special facilities to supplement those used for living. These
would include an educational facility, a work and a training program in the same
environment as the housing arrangement, all vital to the therapeutic atmosphere.
These would all be located in the community but would be near an institutution
for use of its services and personnel.
Implications: Aside from housing facilities an all-around living program is
described where a great many needs can be met while maintaining the individual's
independence. Rehabilitation can be accomplished within the community in the
areas of emotional and social adjustment.
Bjaanes, Anne and Butler, Edgar. "Environmental Variation in Community Care
Facilities for Mentally Retarded Persons." American Journal of Mental
Deficiency, January, 1974, Vol. 78, p. 429-439. from Psychological Abstracts.
The authors examined the behavioral component of community living facilities
for the mentally retarded and the development of independence in two specific
types: the board and care facility and the home-care facility. (By board and
care they were referring to renting group apartments with a hospital still
legally responsible.) They found: a) board and care facilities were closer to
normalization, b) more independent behavior resulted in board and care types,
c) community exposure was a normalizing factor, and d) the development of inde-
pendent functioning was related to geographic location of the facility and the
type of staff available.
Implications: This last component--geographic location and type of staff--was
not actually described but could be an important factor to consider in seeking
"normalizing" housing programs. Again, a facility in the community proved to
further independence and social adjustment in former patients and even if some
connections with an institution were necessary it is still a step out of
residential care for this handicapped population.
-1-
Brattgard, Sven-Olof. "Integrated Living for the Severely Disabled."
Models of Services for the Multi-Handicapped Adult. International
Cerebral Palsy Society, 1973 Conference, New York City.
The author established the Fokus Society in Sweden in 1964 in an effort to
construct apartments and provide services for the severely disabled in apart-
ment complexes built for the non-disabled population. Included in this article
on living arrangements are sub-topics about medical treatment and training,
basic apartment designs, systems of transportation, an analysis of financial
expenses and the general adaptability of this type of housing project to
other countries.
Implications: The basic approach behind this model of service is that the
severely disabled can, often do, and most certainly should be allowed to live
in an integrated society. Moreover, "politicians, civil servants and special-
ists must all be made to feel part of this type of planning.
Brof, Per-Gunnar. "The Physical Environment and the Visually Impaired."
ICTA Information Center, Bromma, Sweden. Published March, 1974.
This article discusses a different handicapped population--the visually
impaired--and their particular housing needs. It reports on a project carried
out at the Swedish Institute for the Handicapped to determine types of facil-
ities necessary in the total environment of the visually impaired. It describes
important secondary features as well (library, shops, schools, etc.)
Implications: This is one of the few articles discussing housing of the apart-
ment complex type for the visually handicapped. It brings out their special
needs and their implications for planning. Among these are emotional needs
which could be filled in this independent housing program.
* Brown, John. "Moving Into the Community."
Reactions of a group of staff and emotionally disturbed children who
moved from semi-institutionalized settings into ordinary houses in the community
are explored. Problems in community and school acceptance, difficulties in
adjustment to small group living, cooperation in household tasks, etc. are
discussed. Feelings, attitudes and emotions of all involved parties are also
examined very closely, taking into account the important consideration of
psychological adjustment.
Implications: This article does not study an actual apartment arrangement or
architectural design for a house for the disabled. Instead it concerns itself
with the emotional aspect of this living program and suggests further study
into this area before any housing complex is organized.
Bryant, Daniel C. "Designing for the Mentally Handicapped." Rehabilitation
Literature. November, 1964, P. 331-332; 340.
The designs described in this article were used in a Training Center for the
mentally retarded but some features can be incorporated into apartments and
private living facilities. A major point was to keep the environment uncom-
plicated--it shouldn't be too distracting so that the person living there can
give full concentration to the performance of necessary tasks.
Implications: The focus here again, was on physical structures for a home for the
handicapped rather than a description of an independent living program. However,
the designer brought up an interesting consideration--on the necessity for a non-
distracting environment. Before any complex can be organized the individual
dwellings have to be built and for the mentally impaired, more than the physically
disabled, this author's point should be kept in mind.
*Abstracted from Exceptional Child Education Abstract
-2-
Chance, Arthur. "Hostels Within the Community." Teaching and Training, 8(4),
p.102-108, 1970. Abstracted in Mental Retardation Abstracts.
The author of this article feels the mentally retarded individual should have
housing arrangements to administer to human needs of independence and self-
reliance. Institutional care only gives basics for existence while a community
residence furnishes a near normal family life and prepares for return to the
"outside." Presently hostels have problems of acceptance by the community and
financial support.
Implications: This author again argues for the emotional and social benefits
of an independent housing program for the mentally retarded. The hostel idea
has been catching on and quite a few are now in existence. It seems that these
group housing programs need more staff and services associated with an institu-
tion when they are for the mentally handicapped, while modifications in environ-
ment are necessary for the physically disabled population.
*Coleman, Thomas and Hyman, Milton. "A Preliminary Study/Survey for Demonstra-
tion Community Housing Programs for the Adult Mentally Retarded, Physically
Handicapped and Mentally Ill." Wayne State University, Department of Special
Education and Vocational Rehabilitation.
A study was conducted for the Michigan State Housing Development Authority to
gather background data necessary to initiate prototype community housing for
mentally and physically handicapped independent adults. Three major areas were
investigated: 1) legislation supporting construction of special facilities
(funds, agencies, etc.), 2) architectural and transportation barriers involved
in such a project; special services needed, etc. and 3) attitudes: community
and the disabled population. The authors found that very little public sup-
ported housing of this type existed, and if it did the facilities were often
isolated and inadequate. Also, parents of the handicapped, citizens and the
disabled themselves all support such community living arrangements.
Implications: This was a very in-depth study of all major aspects of the
independent housing for the disabled problem. The results are important for
future planning: public agencies should be sought for financial and other
assistance; these facilities should not be segregated or isolated and all types
of community services should be available to the residents.
Columbus, Dorothy and Fogel, Max. "Survey of Disabled Persons Reveals Housing
Choices." Journal of Rehabilitation, March, April,1971,Vol.37,No.2,P.26-28.
This report summarizes questionnaire results on housing requirements from a
large sample of disabled persons living in Philadelphia, Pennsylvania. All were
able to return to the community. The types of housing offered were: A: only
physically disabled.B: mainly non-disabled but could accommodate a small number
of disabled. C: mainly physically disabled with some non-disabled. D: physically
disabled and elderly non-disabled. Results showed most preferred B, least
preferred A.
Implications: The authors concluded that disabled individuals preferred living
in a "normal" environment, not a completely segregated (physically disabled
population) residence. Taking a person's actual choice into consideration is
the most important factor in providing a living arrangement for him and the
recommendations in this article should set the guidelines for future planning.
-3-
Dickman, Irving R. "No Place Like Home". United Cerebral Palsy Associations, Inc.1975.
This publication suggests that even the most severely disabled teenagers and
young adults, given sufficient motivation, can move from parents' homes and insti-
tutional placements into ordinary apartments and living units in the general com-
munity, just like their non-handicapped peers.
Implications: Rather than long-range "programs," let alone the building of
special facilities, the way for an agency to help handicapped people to live inde-
pendently may simply be to assist them to find apartments or houses on a unit-by-
unit basis, and then to provide transportation, counseling and other back up
services. There is also the indication that it is for the disabled individual
and not his parents or professionals to decide whether and when he wants to risk
living on his own: since independent living is not a "permanent placement,"
there is no overriding need to succeed, either for the handicapped person or his
agency. Useful appendices deal with architectural and other adaptations, and
with supportive services available through federal funding.
Easton, Karl, M.D. "Some Psychodynamic Considerations in the Program Development
of Boerum Hill: A Psychiatric Halfway House." Community Mental Health
Journal, Winter 1974. Vol. 10, p. 395-401.
One particular community setting for emotionally disturbed and mentally retarded
former patients is discussed--Boerum Hill Home and Vocational Rehabilitation
Institute. This is made up of a vocational training program, a facility for
residential care and a satellite apartment complex. The first step out of resi-
dential care is their halfway house. Next comes the "corrective living experi-
ence" where independence in an emotionally healthy environment is stressed.
The living arrangement is designed to reduce anxiety and provide physical com-
fort to insure this goal of mental health. It is a fairly large establishment,
the reason for this being a larger population in which to find friends, form
sub-communities, engage in more group activities, etc. The community is self-
governing, has a library, work facility and job placement office.
Implications: This facility stressed mental comfort, because of the population
it is dealing with, over physical modification of the environment. This is an
often overlooked factor in planning a living program for the handicapped but
should be included in the form of some psychological staff, social work or
placement office available to the inhabitants. The point about a large facility
is interesting and may also be considered as a planning suggestion.
Fenton, Joseph. "Long Term Residential Facilities: The Unresolved Problem for
Non-Retarded, Severely Disabled Adults." Rehabilitation Record,
November, December, 1972, p. 4-7.
The author conducted a survey in New York State to see what small-group facilities,
other than institutional care, were available to disabled persons. There were
none found at the time of this article. Many were in other states though, which
had features of community activities, on-going rehabilitation, experience in
independent living, etc.
Implications: Based on this research, state sponsored facilities which fit the
above description were proposed for moderately disabled individuals and a more
supervised arrangement was suggested for the severely handicapped.
-4-
Fishman, Paul L. "Adaptive Housing for the Handicapped." Tufts-New England
Medical Center, Social and Rehabilitation Services Grant
#16P-56800/1-06, October, 1971.
This report grew out of a study undertaken in August 1970 that suggested
"differing modes of housing
to be provided for those who need limited
assistance (as) an alternative to nursing home care." Included in this
report on "adaptive housing" (which the author believes is a more neutral
term than "sheltered housing") are sections on identifying the handicapped
and their housing problems, contemporary efforts to create barrier free hous-
ing, developing adaptive housing within existing program, production of
adaptive housing, institutional sponsorship of adaptive housing, barrier free
design and required services, a proposal for adaptive housing, and their con-
clusions, recommendations and uncertainties. The appendix includes function
levels of different disciplines, sources of help for disabled at home, long
term care facilities, the nature and effect of selected handicapping con-
ditions, agencies serving the handicapped, effects of various housing sub-
sidies on monthly rent and a bibliography for further information and materials.
Implications: This report outlines in great detail the ramifications of
adaptive housing for those persons who may be moderately or severely disabled.
The strongest message that comes through in this report is that the housing
problem facing the disabled is "everyone's concern but no one's responsibility."
Ford, Chris W. "Better Living for the Disabled." Cerebral Palsy Review,
January, February, 1965, Vol. 26. p. 14-16.
This article describes several attempts to modify the environment and design
new living arrangements for the handicapped to enhance independence and foster
individual productivity. Home improvements (ramps, lifts, etc.) are described
first. Then for those people desiring to live away from home a foster family
program is discussed with an example of Rancho Los Amigos at Downey, California.
This is called the "home coordination program" where three disabled girls
hired three persons to help them while they still managed their own affairs.
Finally, a more independent, more economical design of a community environment
is presented. Several examples are given, among them Chesire Homes located
throughout the United Kingdom where handicapped persons live independently in
a small, emotionally therapeutic atmosphere. Many artists and writers have
emerged from this community. Another such living program is the New Horizons
Group associated with Memorial Hospital in Connecticut. Future programs are
planned with a great deal of cultural and learning facilities as well as the
actual housing facilities.
Implications: Alternatives to residential care for the physically handicapped
are discussed but the focus in these programs is on individual creativity and
active usefulness of the inhabitants. A cultural atmosphere is included in
the therapeutic quality of the setting, something to be considered in future
apartment-group living programs.
-5-
Fritz, Margaret, Wolfensberger, Wolf, and Knowlton, Mel. "An Apartment living
Plan to Promote Integration and Normalization of Mentally Retarded adults."
Canadian Association for the Mentally Retarded, National Institute of Mental
Retardation, York University, Downsview University, Downsview,
Ontario, Canada, May 1971.
This paper reviews the programs for residential services for retarded persons
in Douglas County, Nebraska. It reviews the social integration effects of
various residential living arrangements as well as the care-supervision impli-
cations of each type of residential pattern. Portrayed throughout is a wide
range of possible housing and residential arrangements, their financial and
social costs and effects. An appendix is included which describes the admin-
istrative and program details for developing these housing options.
Implications: Provides clear exposition of the positive values of each type
of housing option developed to meet the criterion of normalization for mentally
retarded adults. Describes the financial and social consequences of tradi-
tional versus normalizing residential patterns for retarded persons.
Goodfellow, Robert A., Jr. "Group Homes-One Alternative." Center on Human
Policy, Division of Special Education and Rehabilitation, Syracuse
University, Syracuse, New York, 1974.
This, the seventh in a series "Notes from the Center" reviews the experience
in the Center in the creation of two group homes; one for children and one
for adults. The problems and solutions developed in establishing these two
homes are summarized or detailed in sections throughout this 38 page monograph.
The topics covered include: "defining your constituency," "establishing a
need," "locating or developing funding resources," "selection of a site,"
"meeting local resistance" and "establishing the home." Two appendices cover
a sample budget and an outline for a group home proposal respectively.
Implications: This pamphlet provides an excellent synopsis of reasons, the
trials, tribulations and satisfactions in establishing group homes as one method
in the normalization process for "retarded" children and adults.
Goodwill Industries of America, September, 1974. "Proceedings of National
Conference on Housing Handicapped."
During this conference, 150 professionals representing both government and
volunteer groups convened to examine the problems involved in Housing and the
Handicapped. In addition to a close examination of the problems, a review of
existing programs and planned programs was presented. Lastly, it was the
purpose of this conference to help "develop a national program of action to
provide community based housing responsive to the needs of the handicapped."
Thus, included in this pamphlet are the remarks of many of the participants,
an appendix listing the names and addresses of Conference Participants, a
section of the Housing and Community Development Act of 1974 (Special Pro-
visions for the Handicapped, Disabled and Elderly) and a brief description
of Foreign Programs for the Handicapped.
Implications: The purpose of this conference was to develop "the foundation
for a permanent coalition of all interests working toward improvement of the
environmental and living arrangements for the bandicapped and disabled."
-6-
"Handicapped, Disabled and Elderly-Public Housing." Report, Journal of Housing.
August, September. 1971, No. 8, P. 417-419.
Specific projects which authorized low-income housing for the disabled are
described. They all recognize the need for congregate facilities as well as
separate apartments. Also, most were located near some hospital or institution
and residents received some sort of out-patient care. Several of these were:
1) in Syracuse-for the elderly, 2) in Columbus, Ohio next to the state mental
hospital for its released patients, 3) Seattle Center for the Handicapped
(orthopedically and neurologically impaired) and 4) Fall River, Massachusetts
for physically handicapped receiving out patient care.
Implications: The facilities described had several things in common but especially
one--the services of the nearby hospitals were still very much needed. But the
residences did give their population independence and experience in community
living. It is a particularly good program when complete independence and self
care cannot be achieved but some degree is desired.
Hasselkus, Betty and Kiernat, Jean M. "Independent Living for the Elderly."
American Journal of Occupational Therapy. May, 1973 Vol.27 P. 181-188.
The program described here, in Madison Wisconsin, is a group living arrangement
for the elderly where they plan their own budget, policies, etc. with some aid
from the community. It is sponsored by the Neighborhood House of Madison, part
of the Madison Neighborhood Centers. There are three components to this program:
1) adult education classes concerned with specific disabilities, 2) home consul-
tation (to modify aspects of the environment as it becomes necessary) and
3) transportation (provided for by students at the nearby university.)
Implications: The main feature of this particular program is the adult education
aspect. This provides on-going advice and feedback to the individual about his
disability and adapting successfully to his new environment. It is an all
around therapeutic program--it provides independent housing, social therapy and
educational awareness to its inhabitants in order to increase their level of
functioning.
Helsel, Elsie D. "Avenues of Action for Long Term Care of the Multiply Handicapped."
Rehabilitation Literature. September 1965, Vol. xxvi, No. 9, p. 262-269.
Some alternatives to institutional care for multiply handicapped individuals are
examined: 1) Nursing homes--satisfactory but only where physical care alone is
needed. Rehabilitation and independence are secondary. 2) Foster homes--this
is a better way to integrate the handicapped person into society but there are
many problems with placement and still, independence is not complete, 3) Regional
Centers where workshops are the main focus and not the living arrangement,
4) Low-rent housing--becoming the trend now but the proposal which has the most
practical problems: financing and staffing for long-term usage.
Implications: Different housing alternatives are described to accommodate the
disabled person and help him develop whatever potential for independence he
may have. Very real problems are discussed for programs at all levels of small
group living. The need for continuing financial backing and an experienced,
on-call staff are the major drawbacks of the apartment arrangement, but agencies
and solutions are suggested which could help this most independent residence
succeed.
-7-
"Housing Needs of the Handicapped." A Study Conducted by the Massachusetts
Association of Paraplegics, Inc. in cooperation with the Massachusetts
Council of Organizations of the Handicapped. November 1970.
This pamphlet presents the results of a survey, using a questionnaire, under-
taken in 1965-66 of 250 members of the Massachusetts Association of Paraplegics.
On the basis of this sample, the following conclusions and recommendations
were made: 1) More adequate housing was needed by 50% of the handicapped
persons and that given this new adequate housing, 68% would move; 2) apartment
units should be constructed in each area of Massachusetts to meet needs of
handicapped persons; 3) renovated housing should consider the needs of the
handicapped; 4) incentives should be provided to private contractors to build
single and multiple family dwellings that are accessible and usable by handi-
capped persons; 5) establishment of a housing council of legislators, rehab-
ilitationists, housing and urban specialists and architects. This council
should develop priorities and centralized information on housing for the
handicapped.
Implications: The report presents in table form, payment limits for specialized
housing, type of housing units required, ranking of required design features,
ranking of required services and tenant population derived from the population
who were surveyed.
Jeffrey, Dorothy. "A Living Environment for the Physically Disabled."
Rehabilitation Literature. April 1973, Vol. 34, No. 4, p.98-103.
Three apartments designed with features for the physically handicapped are
described: 1) Center Park in Seattle, Washington. 2) Highland Heights, in Fall
River, Massachusetts. 3) New Horizons Manor in Fargo, North Dakota. They all
have HUD support and are managed by local housing authorities. The "village
concept" is also described--a complete living environment for single disability
groups.
Implications: These projects all strive to provide the individual with inde-
pendent living experiences and support according to his needs. A full time
staff is not necessary and the buildings are not always near hospitals. But,
disabilities are grouped together which might be one drawback of such a
program. A disabled person should be exposed to a great deal of community
involvement and an integrated housing arrangement could offer a more all-around
therapeutic environment.
Klein, Leon. "The Hospital Halfway House." Mental Hygiene, Summer, 1972,
Vol. 56 p.30-33.
Several pre-requisites for a transitional community-located facility to foster
independence and prepare for self-sufficiency in a population of former mental
hospital patients are listed. These include a good administrative and pro-
fessional staff, individual counseling, a home-making program and some work
facility located in the community. This housing project would be physically
owned by the hospital but operated by the inhabitants "non-medically."
Implications: This is another design for a semi-independent housing facility
for the mentally handicapped again stressing some sort of counseling service
as part of the total environment. It is associated with a hospital but provides
a different kind of "treatment" for its inhabitants--it allows them to adjust
emotionally and socially to the outside community before complete discharge
into that community.
-8-
Klein, Stanley and Abrams, Susan. "Public Housing for Handicapped Persons?"
Journal of Rehabilitation. March, April 1971 Vol. 37, No. 2 p. 20-21.
The authors of this article take the stand that integrated housing would be
beneficial to handicapped and non-handicapped individuals alike. Their
reasons are: 1) living environments can be easily adapted, 2) medical atten-
tion is not necessary for many disabled persons and 3) money does not have
to be a problem--the inhabitants would have to be working and able to
contribute a portion of the rent. Three such settings are discussed: Fall
River, Massachusetts--elderly integrated with handicapped, located on Municipal
Hospital grounds. Baltimore--funds have run out but originally the Baltimore
Urban Renewal and Housing Association sponsored it. Detroit--elderly and
younger residents are integrated. The United Fund partially supports it.
Implications: These three examples illustrate the fact that an integrated
housing approach can work. A major problem is funding but the philosophy of
having disabled persons working, living and contributing to the community
is valid.
Luckman, Irwin. "House for a Paraplegic Veteran." Progressive Archetecture
April, 1953 p. 89-91.
The orientation of this architect is to design to the strengths, "seek out
and exploit those abilities a person still possesses." His goals are maximum
performance, maximum therapy, maximum pleasure. Therapeutic devices are
incidentally worked into the environment.
Implications: This article offers the most positive philosophy in designing
houses for the handicapped. Unlike most other constructions with ramps, wider
doors, etc. this designer builds in parallel bars, overhead bars, a special
bathroom-bedroom lifting device--all continuations of the type of therapy
measures a person would receive in rehabilitation training, focusing on his
strengths.
May, Elizabeth, Waggoner, Neva R. and Hotte, Eleanor B. "Independent Living
for the Handicapped and the Elderly." Houghton Mifflin Company, 1974,
p. 271, Boston, Massachusetts.
This 13 chapter book focuses on the "how to" approach in moving from depen-
dency to independent living. The authors devote 3 chapters to the design and
adaptation of clothing, 2 chapters to homemaking skills, 2 chapters to child
care, 1 chapter on how to play with children despite physical disabilities,
other chapters on planning and adapting the home to save energy and time and
2 general philosophical chapters summarize the emphasis on independent
functioning despite age or physical limitations. The book presents material
gathered from "nearly 300 programs on independént living in the United States,
Canada and 10 foreign countries." Along with mumerous pictures and illustra-
tions, the book offers 8 appendices of commercial and non-commercial sources
for adaptive devices, periodicals published by and for the handicapped, agencies
providing services to the handicapped and a bibliography for further information
on areas covered in the book.
Implications: This is one of the most complete handbooks on helping the handi-
capped to become independent.
-9-
*Muller, Henrik. "Well Planned Town Centers--A Contemporary Demand of the
Handicapped." ICTA Information Center, Bromma, Sweden
The needs of handicapped persons in terms of structure of the whole physical
environment are discussed. Recommendations are made for small to medium
sized agglommerations in rural areas, with provisions for housing, work,
services (schools, library, shops, church, etc.), transportation and open-
air facilities.
Implications: The model village described offers a very compact, complete
independent living arrangement for the handicapped. All possible needs are
attended to and serviced, however the segregated nature of such a facility
might have a detrimental effect psychologically and this problem was not
explored in the article.
O'Connor, Gail and Sitker, George. "The Study of a New Frontier in Community
Services: Residential Facilities for Developmentally Disabled Persons."
Working Paper, Oregon University; Rehabilitation Research and Training
Center in Mental Retardation, December, 1973.
This is the first part of a survey of community group facilities for the adult
mentally retarded focusing on types of facilities, referral sources, develop-
ment of the program, population and problems. The authors have found many
such designs for living are associated with institutions or sheltered work-
shops (the source of referral;) others had private funding and obtaining the
proper staff and money were major problems. The second half of the study
deals with actual styles of resident life, interrelationships in these
communities and reaction of the general community.
Implications: Instead of describing one particular program of independent
living the authors studied the general characteristics of these programs, and
problems, and will continue to study their actual workings. These studies are
necessary and provide valuable data on which to base a housing program for
the handicapped.
"Operating Manual for Residential Services Personnel." Nisonger Center for
Mental Retardation and Developmental Disabilities, Ohio State University,
Columbus, Ohio 1974.
Divided into 32 chapters in 10 sections, this publication serves as a guide
to assumptions, establishment and operation of a group home for develop-
mentally disabled persons. The manual provides a detailed coverage of such
topics as personnel, development of the residents, medical-nutritional
aspects, legal factors, and emergencies.
Implications: This manual can serve as an excellent guide for all staff
responsible for the management of group homes or hostels. It would be useful
to advisory groups responsible for the planning and developing of community
housing for disabled persons.
-10-
Perske, R. and Marquiss, J. "Learning to Live in an Apartment."
Mental Retardation. October, 1973, Vol. II, No. 5, p. 18-19
A project in Omaha was described where 18 men and women became live-in friends
to 30 mentally retarded, working adults. They helped these people make the
transition to community living and taught such skills as shopping, money
management, mass transit, etc. The program was backed by the Eastern Nebraska
Community Office for Retardation (ENCOR) and the Greater Omaha Association
for Retarded Children.
Implications: This apartment living project approached a very real problem--
helping the handicapped individual "cope" with society in practical terms.
Since much of this population came from an institution-type setting, they
had to actually be taught leisure activities--they were going from programmed
days to independence and this factor has to be taken into consideration in
planning staff and activities for any community living arrangement.
Psomopoulos, Panayiotis. "The Quality of Life for the Handicapped."
Models of Service for the Multi-Handicapped Adult. International
Cerebral Palsy Society, 1973 Conference.
The author turns his attention to the problems of the disabled as they try
to cope with a physical environment that grows more and more complex. As an
architect and city planner in Greece, he defines the term "handicapped" and
then goes on to define "human settlements." An interesting aspect of the
article is the author's belief that "at some period in his life everyone has
experience of operating as a disabled person." Using this criterion, he
suggests that at any given time 50% of the population are disabled; the author
believes that "the quality of life in today's urban settlements is poor for
both disabled and able."
Implications: We have a long way to go toward improving human settlements and
what may be needed first is a general change in our attitudes and a change in
our priorities, to permit human settlements to be "built for the comfort and
safety of all its members."
Ragan, Charlotte E. "Retarded Adults in Foster Homes." Rehabilitation
Record, September, October, 1971, Vol. 12, p. 37-39.
In this program mentally retarded adults in Missouri are placed into private
foster homes in a community project known as Sikeston-Delmo. The families
who participate receive public funds and provide a family atmosphere and an
independent living experience in return. An activity center is located for
the handicapped inhabitants along with speech therapy classes, other special
classes and a counseling center. They have freedom to move around and live
within the community with other handicapped individuals as well.
Implications: This program appears to simply provide homes for the mentally
retarded who do not have families of their own to live with. However, it
goes a step further by establishing an entire community to house these
individuals in a therapeutic and learning environment and allowing them
independent experiences in this community.
-11-
Richmond, Charles. "Therapeutic Housing." Rehabilitation Record.
November, December, 1972, p. 8-13
Halfway houses for the mentally ill and socially maladjusted were discussed.
A supervised group living experience as a step towards independent involve-
ment in the community is the philosophy behind this program. A "sub-society"
is the idea. The use of the group is therapeutic and important to the
rehabilitation of the residents. One in San Mateo County, California,
El Camino House, is described. Management is accomplished with the help of
the residents. The next step out is extra-miral housing where small groups
live without staff. The Satellite Housing program in the same county is an
example of this with graduates of El Camino.
Implications: Halfway houses, with their protective re-creation of the out-
side have been in existence for some time. They offer a good first step into
the community for disabled people who still need supervision in some areas.
The extension of the program to a more independent design contimues the progress
the residents had made and allows them to develop their maximum potentials.
It can be included as part of the rehabilitation process of mental institu-
tions or training centers as an out-patient kind of therapeutic measure.
Robb, J. "Buildings for the Handicapped and/or Aged." The Bulletin of the
American Institute of Architects. January, 1952, p. 1-18.
The article describes an architectural design for apartments for the aged,
mainly. The goal is independent, congregate living. Some features are one
level dwellings, more heating, several safety measures and not too many
corners or details. It is an alternative living arrangement to institutional care.
Implications: Although the houses described were designed mostly for the elderly,
they can be adapted to fit the needs of a disabled population. A housing
complex which uses certain architectural designs to facilitate day-to-day
living is the first step towards implementation of a new, independent residen-
tial program.
Shapiro, Helen. "Circle of Homes-Group homes for the Retarded in Cuyahoga
County.' Mental Retardation June 1973, Vol. 11, No. 3 p. 19-21
"Circle of Homes" is a housing community for adult retardates co-functioning
with training centers. Their premise is "work in the community, live there."
The first one opened May 5th, 1971, has a large professional staff available
but most of all, gives an independent living experience to the retarded adult.
Implications: This residence plan is based on the rationale that group homes
are part of the continuum of services for the retarded. This is an important
consideration--if an individual can work in the community then he should be able
to live independently in this same community. In fact, the transition and
adjustment should be easier for him. The necessity for a multi-faceted
therapeutic environment is illustrated by this point.
-12-
Stein, Edna and Sorenson, Karl. "A Cooperative Apartment for Transitional
Patients." Mental Hygiene, Winter 1972, p. 68-74.
A model living program for female patients discharged from Metropolitan
State Hospital in Massachusetts is described. The Brookline Association for
the Mentally Handicapped is the agency responsible for this residence which
started in 1963. Four individuals live in this apartment at one time--
there have been many groups of four since the beginning because of the
temporary nature of the program. The inhabitants work, live in the community
and are completely self-sufficient. The only contact they maintain with the
hospital is in the form of meetings once a week with a social worker to discuss
problems, activities, issues that may arise, etc. The long term results of
this independent living facility are good except for one undesirable feature--
the constant changing of inhabitants and living with people in crisis. This
is a temporary, semi-supervised environment simulating a community experience.
A similar one for men was opened in 1970.
Implications: Again, it appears any independent housing facility for the
mentally handicapped population still maintains some services of the former
hospital and has to deal mainly with problems of emotional adjustment. The
point regarding the rapid turnover of inhabitants and the unstable nature
they bring to this arrangement should be considered in planning for related
services or a volunteer staff in such a program.
Wolfensberger, Wolf. "The Principle of Normalization in Human Services."
National Institute on Mental Retardation,
Toronto, Canada, 1972, 255 pages.
Chapter 6 (Architectural-Environmental Implications)
Chapter 7 (Implications of the Normalization Process to Residential Services)
In the first of these two chapters, the principle of normalization is
applied to institutional buildings (Chapter 6) with special attention to
the architect's task of responsibility. In the second of these chapters
(Chapter 7) the normalization principle is framed around a series of
6 implications (integration, smallness, separation, the domicilary func-
tion, specialization and continuity.) The chapter then covers recommended
procedures for economical residential patterns that maximize the normal-
ization process.
Implications: Particularly relevant to residential planning and advisory
groups as well as architects and student-architects, these two chapters
provide clear caveats. These warnings, if observed diligently, can improve
the opportunity for disabled persons to avoid the secondary disability
resulting from evasion of their normalization needs.
-13-
United States Department of Health, Education & Welfare, Social &
Rehabilitation Service. Community Services Administration,
Housing Report No. 1, 1970. "Toward Housing & Community Improvement."
This is a 25 page pamphlet containing data on "the role of public welfare
in housing." Most of the tables included in this booklet derive their
information from a questionnaire circulated by the Department of Health,
Education & Welfare to all State Departments of Public Welfare. The
purpose (for the collection of this data) was to stimulate "government
action toward housing and community improvement in accordance with the
recommendations of the HEW Housing Report."
Implications: The main theme discussed in this pamphlet is that "major
shortcomings of housing for public assistance recipients" be overcome
to help all people, regardless of their socio-economic status, to own
his own home or to help him or her meet minimum standards of living that
are in keeping with the surrounding community.
United States Department of Housing and Urban Development, United States
Printing Office, Washington, D.C., June 1971. "The Built Environ-
ment for the Elderly and the Handicapped: A Bibliography."
This 42 item bibliography covers ten broad areas in an effort to "persuade
planners and architects to consider the physical building, (and) its
site in relationship to other segments of the population. Some of
the sub-areas included are the aging process, foreign experience,
architecture and space use, senior centers and the handicapped.
Implications: Using these references, planners and architects who are
responsible for housing can broaden their plans to include the recent
information and guides to "the built environment" for the elderly and/or
handicapped persons.
-14-
ADDITIONAL REFERENCES
"A Brief Checklist of Recent Publications Relating to Architectural Planning
for the Physically Handicapped." Revised April, 1970. Chicago: National
Easter Seal Society for Crippled Children and Adults.
"Access for the Disabled to Buildings, Part 1, General Recommendations,"
British Standard Code of Practise, CP-96: 1967, British Standards
Institution, London.
"A Decent Home. Report of the President's Committee on Urban Housing, Washington:
Government Printing Office, 1969
"American Standard Specifications for Making Buildings and Facilities Accessible
to, and Usable by, the Physically Handicapped" A117-1961, The American
Standards Association, New York, 11 pages.
"Architectural Barriers Legislation for Aiding the Handicapped from the Code of
the City of Rochester, New York." Spencerport, New York: General Code
Publishers Corporation, City of Rochester, New York, 1967.
"Beltsville Energy-Saving Kitchen, Design 2," Leaflet No. 463, April, 1961, and
Design 3, Leaflet No. 518, February, 1963, U.S. Department of Agriculture,
Government Printing Office, Washington, D.C.
Chatelain, L. "Architectural Barriers--A Blueprint for Action," National Easter
Seal Society for Crippled Children & Adults,
Chicago, Illinois
Chatelain, L. Rehabilitation Record, Vocational Rehabilitation Administration,
Washington, D.C. "More Accessibility for the Handicapped." November,
December, 1965
"Child Care Equipment for Physically Handicapped Mothers," Storrs: The School
of Home Economics, University of Connecticut, 1961.
"Conferences: The Physically Disabled and Their Environment, "Stockholm,
October 12-18, 1961. Report of the Proceedings. Sweden: Stockholm Stads
Arbetsvardsbyra, 1962. Distributed in the United States by ISRD,
New York.
Dantona, R., and Tessler, B., Rehabilitation Literature, "Architectural Barriers
for the Handicapped; a Survey of the Law in the United States," National
Easter Seal Society for Crippled Children and Adults.
Chicago, Illinois
"Design for All Americans." A Report of the National Commission on Architectural
Barriers to Rehabilitation of the Handicapped. United States Department of
Health, Education and Welfare, Government Printing Office, 1967.
-15-
"Design of Facilities for the Mentally Retarded: Diagnosis and Evaluation,
Educational and Training Living Units," United States Public Health
Service, Division of Hospital and Medical Facilities, Washington, D.C.,
1966, 46 pages.
"Design for the Disabled Helps the Able,"
"Designing for the Disabled: Design Details," Birmingham, Alabama, City
Architect's Department, Official Architecture and Planning, May 1968,
p. 647-649.
"Equipment for the Disabled: An Index of Equipment, Aids and ideas for the
Disabled." Margaret Agerholm, Medical Editor, 1966. 4 Vols. (Revised and
Enlarged) National Fund For Research Into Crippling Diseases, Vincent
Houst, London, S.W. 1, England. Available in United States from Interna-
tional Society for Rehabilitation of the Disabled,
New York, New York
"Fokus: A Way to Form a Future." Fokus Society--Housing and Work for the Disabled.
Goteborg: The Fokus Society. Vastra Hamngatan 24-26, 41117 Goteborg, Sweden.
Goldsmith, Selwyn, "Designing for the Disabled"--2nd Edition. A Manual of Tech-
nical Information. Royal Institute of British Architects, London,
1967 (207 pages).
Goldsmith, Selwyn, "Housing for the Disabled." Official Planning and
Architecture, May 1968. p. 635-640.
Gutman, Carolyn, Thomas, Charles E., "Wheelchair to Independence: Architec-
tural Barriers Eliminated." Springfield, Illinois, 1968, 136 pages.
Hamngatan, Vastra 24-26, S411, 17 Goteborg, Sweden, December 1969, "Principles
of the FOKUS Housing Units for the Severely Disabled."
Hampden, RobbJ., AIA, "Houses for the Handicapped," American Institute of
Architects Bulletin, January, 1952, pp. 15-17.
Hilleary, James F., "Buildings for ALL to Use." AIA Journal, March 1969. This
article includes "An Annotated Bibliography on Barrier-Free Architecture,"
Reprints from: University Microfilms, Inc.,
Ann Arbor, Michigan.
Holzworth, Karl B., "Restroom Provides for the Handicapped," Park Maintenance
January, 1970, p.8-9. Available from Park Maintenance, P.O. Box 409,
Appleton, Wisconsin.
"Helping all the Handicapped." Massachusetts Vocational Rehabilitation Planning
Commission, Boston, 1968.
-16-
"Housing for the Disabled." Netherlands, 1966. Available from International
Society for Rehabilitation of the Disabled. New York, New York.
"Housing Needs of the Handicapped." Massachusetts Association of Paraplegics,
Research Division. Study conducted in cooperation with Massachusetts
Council of Organizations of the Handicapped under contract from the
Massachusetts Rehabilitation Commission. November, 1970.
"Housing for the Elderly," with Special Consideration for the Handicapped.
United States Department of Housing and Urban Development, Federal
Housing Administration. Washington: Government Printing Office, 1967.
"Housing for Disabled Ex-Servicemen," Architectural Review, Vol. III,
p. 51-52, January 1952, Illustrated.
"Housing for the Disabled: Notes on Design," Official Architecture and
Planning, Ed., May 1968, p. 644-646.
Johnson, Ralph J., "Buildings for the Handicapped and/or Aged, "American
Institute of Architects Bulletin, November, 1951, p. 2-9.
Judson, Julia S., M.S., APTA: Wagner, Elizabeth, ORT: and Zimmerman, Muriel
E.,B.S., ORT, "Homemaking and Housing for the Disabled in the United
States of America," Rehabilitation, N.Y.U. Medical Center, 1962.
Kettunen, Ruth, "Take It Easy." (A Series of four pamphlets developed in
cooperation with the Michigan Heart Association dealing with work
simplification in ironing and in kitchen and household storage.)
East Lansing: Cooperative Extension Service, College of Home Economics,
Michigan State University.
Kira, Alexander, Associate Professor of Architecture, "The Bathroom Criteria
for Design," Cornell University, Center for Housing and Environmental
Studies, Ithaca, New York, 1966.
Lowman, Edward W., and Klinger, Lannefeld, Judith. "Aids to Independent
Living: Self Help for the Handicapped." 1969. Blakiston Division,
McGraw Hill Book Co., New York, New York.
May, Elizabeth Eckhardt; Waggoner, Neva R, and Boettke, Eleanor M.,
"Homemaking for the Handicapped, 1966. Dodd, Mead & Company, New York
May, Elizabeth Eckhardt; Waggoner, Neva R, and Aho, Sylvia, M. "Work
Simplification in Child Care for the Rehabilitation of Handicapped
Homemakers." Storrs: School of Economics, University of Connecticut,
November, 1963, revised May 6, 1964.
-17-
McCullough, Helen E. and Farnham, Mary B. "Space and Design Requirements for
Wheelchair Kitchens," Bulletin 661. Urban: University of Illinois,
Agricultural Experiment Station, June 1960.
McCullough, Helen E. and Farnham, Mary B., "Kitchens for Women in Wheelchairs,"
Circular 841. Urbana: University of Illinois, College of Agriculture
Extension Service and Home Economics, 1961.
McGuire, Marie C. "Church and Non-Profit Sponsored Housing--A Note for Low-
Income Families." Portion of remarks at 52nd Annual Meeting of National
Conference of Catholic Charities. October 11, 1966, New Orleans, Louisiana.
McGuire, Marie C. "Housing for the Handicapped." Presented At Conference on
Building a Barrier-Free Environment. Columbia, Maryland, April 29, 1971.
McNab, Archie. "Designing for the Elderly: Environmental Needs." Official
Architecture and Planning. May, 1968. p. 641-643.
Nugent, Timothy, "Design of Buildings to Permit their Use by the Physically
Handicapped," National Easter Seal Society for Crippled Children and
Adults, Chicago.
Nugent, T.J. "A Challenge-New Concepts in Living." Proceedings of the National
Institute of Making Buildings and Facilities Accessible to and Usable by
the Physically Handicapped. Chicago: National Easter Seal Society for
Crippled Children and Adults, November, 1965.
"Open Passage for the Handicapped," Progressive Architecture, Vol. 42,
p. 148-151, December, 1961, Illustrated.
Pastalan, Leon A., and Moyer, L. Noel, "Vistula Manor Demonstration Housing
for the Physically Disabled.' Fina1 report, April 20, 1969. Toledo,
Ohio Research Foundation, University of Toledo, Ohio 43606
"Planning for the Handicapped." House for a Paraplegic, Progressive Architecture,
Oakland, California, April 1953, Vol. 34, p. 89-91.
Poulter, R.G. "Dwellings for the Disabled." Journal of the Institute of Housing,
Vol. XXXVI, No. 4, March 1965, p. 189-192.
"Readings in Homemaker Service: Selected Papers Presenting the Background, Uses
and Practices or Homemaker-Home Health Aide Programs." National Council
for Homemaker Services, New York 1969.
Rehabilitation Gazette: "Housing and Home Services for the Disabled in the
United States." Vol. XVI 1973, p. 38-45.
"Rehabilitation of the Physically Handicapped in Homemaking Activities" (plus
bibliography.) Proceedings of a Workshop, Highland Park, Illinois,
January 27-30, 1963. Washington, D.C.: Department of Health, Education and
Welfare, Government Printing Office.
-18-
"Self Help Devices for Rehabilitation," (Sixth report deals with bathrooms,
household equipment.) New York: New York University, Bellevue
Medical Center.
Tesone, S. L. "Housing for the Physically Impaired: A Guide for Planning
and Design." United States Department of Housing & Urban Development,
Washington, 1968.
"The Real Man," AIA Task Force on Architectural Barriers; a Looseleaf
Publication containing measured drawings of wheelchair, parking lots,
doorways, showers, telephones, restrooms, etc., all designed for use
by the handicapped. Washington.
"The Right to Choose." Achieving Residential Alternatives in the Community.
National Association for Retarded Citizens. October, 1973.
Wallis, H.F., "Housing for the Disabled." Local Government Chronicle,
October, 1970. p. 1250-1252 plus.
Warren, Earl. Legal Institute. "Handbook on Housing Law. Vol.1. Guide to
Federal Housing, Redevelopment and Planning Programs." Berkely:
University of California, 1970
"Wheelchair Houses." Paralyzed Veterans of America, Inc., 1959.
"Work Simplification for Child Care," (Bulletin). The School of Home
Economics, University of Connecticut, 1962.
Yuker, Harold E., Cohn Alfred and Feldman, Martin A., "The Development and
Effects of An Inexpensive Elevator for Eliminating Architectural
Barriers in Public Buildings." 1966. Hofstra University, Hempstead,
New York, 112 pages.
-19-
United Cerebral Palsy Associations, Inc.
May, 1975
REHAB BRIEF
BRINGING RESEARCH INTO EFFECTIVE FOCUS
Choosing An Independent Lifestyle:
Housing Alternatives for Severely Handicapped Persons
Vol. I, No. 5
May 25, 1978
A paraplegic girl sees herself as "a veritable vegetable
nity facilities. And the Architectural Barriers Act (Public
trapped in a back room up two flights of stairs."
Law 94-80), which requires accessibility in Federally
How did she get there? Through a cycle that has
financed housing built after 1968, is being more strictly
become typical: a person suffers a broken neck. The
enforced. Sections of the Rehabilitation Act of 1973, as
person may leave a rehabilitation center as a functionally
amended, hold promise for increased accessibility to
independent individual. But there is nowhere to go
community activities (504) and strong compliance proce-
except to an institution, which enforces dependency.
dures (502).
Thus, the person loses rehabilitation gains.
The problem of housing severely handicapped individ-
Revised Accessibility Standards
uals has reached major proportions. Because elderly
persons now live longer than previously and many
The American National Standards Institute (ANSI), a
people survive serious accidents, millions of severely
federation of trade associations, technical societies, and
handicapped Americans need housing alternatives to
professional and consumer groups, has set standards for
institutionalization.
making buildings and facilities accessible to physically
No universal solution to this housing problem exists.
handicapped persons. ANSI is revising these standards,
Because society is unprepared to cope with handicapped
which, for the first time, will include specifications for
individuals, they are frequently shut away in institutions,
construction of residential structures. The new standards
even though with adequate support services they could
are scheduled to be published in 1978. The Department
live independently.
of Housing and Urban Development (HUD) plans to
A severely handicapped individual who leaves a nurs-
initiate the building of model units that meet the new
ing home has an increased feeling of worth, independ-
standards in order to determine if such units will be
ence, and accomplishment. Related to this improved
marketable.
self-image are increased possibilities for employment
and education.
CAMPUS-BASED HOUSING
When severely handicapped individuals do not
ALTERNATIVES
achieve independence, the costs become staggering. For
In this country housing experiments have stressed
example, for spinal-cord-injured individuals alone, they
helping the handicapped individual function at as high a
amount to $2.4 billion nationwide for home and institu-
level as possible and providing the least restrictive envi-
tion care and medical costs. It costs anywhere from
ronment. Not surprisingly, many such efforts have been
$2,500 to $7,500 to care for a totally disabled spinal-
on college campuses and have involved young adults
cord-injured person in an institution.
with high levels of motivation and ability.
SEVERAL HOUSING SOLUTIONS ARE
The University of Illinois-Urbana-Champaign
POSSIBLE
Started in 1947 for a handful of handicapped students,
Various groups and individuals have attempted to
a project at the University of Illinois now houses
provide housing alternatives to living in institutions. The
hundreds of students. This program gives students barri-
ideal solution would offer the handicapped individual
er-free access to all aspects of campus life. In the past 30
total accessibility to the entire community. We are far
years, students have lived in a variety of housing facili-
from this goal, since less than one percent of U.S.
ties, including a nursing home, a transitional halfway
housing has wheelchair accessibility.
house, a mobile home, army barracks, campus dormito-
A nationwide campaign for the elimination of archi-
ries, and community apartments.
tectural barriers is necessary for the achievement of com-
The University offers such support services as medical
munity accessibility. Such a campaign is not effectively
consultation, physical therapy, occupational therapy,
underway, although some recent developments point to
counseling, and specially designed buses accessible to
growing recognition of the need for accessible commu-
wheelchairs. Handicapped students are not assigned
REHABILITATION SERVICES ADMINISTRATION
OFFICE OF HUMAN DEVELOPMENT SERVICES
DEPARTMENT OF HEALTH, EDUCATION AND WELFARE
WASHINGTON, D.C. 20201
attendants automatically, but only if they really need
unresolved. Three groups appear to benefit from some
assistance.
sort of group residence, such as hostel, halfway house,
After a week's crash course in independent living,
motel, dormitory, clustered housing, congregate hous-
several C5-C6 quadriplegic students have moved into
ing, or commune. High-level quadriplegic individuals
dorms with no attendant care. Those not ready to live
(C2-C4) may need skilled nursing care as well as attend-
independently move into Tanbrier Halfway House,
ant care and housekeeping. A group residence helps
which provides apartments for able-bodied students who
them to share costs. Many disabled persons use the
help with attendant care.
group residence as a transitional facility where they can
get peer counseling while learning independence. Others
The University of California-Berkeley
simply prefer life in a sheltered facility.
The Physically Disabled Students' Program grew out
of a residential program for quadriplegic students that
Integrated housing helps the disabled individual feel
used an on-campus hospital as a dormitory. Created and
more a part of the community and promotes independ-
run by disabled students, the program provides such
ence. One of the few studies of preference suggests that
services as arranging for living in relatively unmodified
most disabled persons, particularly those who are young
apartments with backup attendants for emergencies and
and severely disabled, prefer to live among able-bodied
a 24-hour telephone service using speaker phones. Lists
people. However, many segregated housing approaches
of apartments and of prospective attendants and cooks
have been successful.
assist students in arranging to share apartments and
services. Program staff also contact apartment manag-
ers about making small necessary physical changes in
Eastern Paralyzed Veterans Associations (EPVA)
their apartments. Students share their knowledge and
experience in cooking, living independently, medicine,
With the philosophy that "any realistic housing pro-
equipment, and preventive care. The Berkeley Physically
gram must integrate disabled individuals with the main-
Disabled Students' Program office provides services
stream of society," The EPVA set up Rosogin House. It
including resource directories, peer counseling, and ad-
serves as a transitional facility that attempts to complete
vocacy.
the rehabilitation process while integrating disabled
individuals into society. It began with three apartments
The Boston Center for Independent Living (BCIL)
for veterans with spinal cord injuries who wanted to
leave a hospital or had unsatisfactory housing. Resi-
Started in 1974 for nine severely disabled college
dents, who stay an average of 6-9 months, share costs.
students, the BCIL served 50 individuals in its first 3½
Publicity from this project has made the EPVA a
years. The Center's emphasis is a program rather than a
clearinghouse for wheelchair apartments.
facility, to help disabled persons bridge the gap between
total dependence and independent living.
BCIL coordinates three separate phases of living. A
transitional living program trains residents of an apart-
There are men living in veterans hospitals who
ment complex in social and physical skills. Cluster
could hold down a job or go back to school and get
housing in modified apartments with an attendant pool
back to the business of living if they had a place to
and night attendants provides greater independence than
live.-EPVA President Terrence J. Morkely, a
the transitional program. To live independently, stu-
quadriplegic.
dents moved to accessible apartments, usually shared
with an attendant.
BCIL residents elect the Board of Directors, and
several disabled persons, including former residents, are
Individual-Created Programs
on the staff.
A quadriplegic victim of poliomyelitis created an
independent living facility out of an apartment building
The Center for Independent Living has obliter-
that was being foreclosed. He hires the staff, and resi-
ated the lock and knocked the cage door off its
dents pool funds to pay for attendant care. The disabled
hinges. It has shown me that there is a functional
residents live on the first floor, with attendants and five
difference between merely existing and living for
community families on the second floor. The manager of
something brighter; the challenge of being individ-
this project says that it would be practical if the residents
ually responsible for my own actions. This is what
owned the complex, and they are seeking funds to
I was prevented from doing before I came to
purchase it.
BCIL.-Walter Zarnowski, the first resident of
A woman disabled by rheumatoid arthritis created the
BCIL.
Glass Mountain Inn, Inc. in Anaheim, California. The
10 disabled men and women and their 5 attendants form
a close-knit and supportive "family."
GROUP RESIDENCES
Handicapped Independence Proven is a business proj-
ect created by a San Diego contractor. He converts
Should severely handicapped persons live in group
existing facilities into duplex units that include resident
residences, or should they be integrated into community
attendants and housekeeping staff for small groups of
housing? A matter of much debate, this issue remains
disabled persons.
COMBINED GROUP RESIDENCES AND
Many disabled and blind persons have moved to
COMMUNITY INTEGRATION
Berkeley because of the CIL, which provides more than
1,400 services a month.
The California Department of Rehabilitation recently
Cooperative Living-Houston
used Innovation and Expansion grants to fund several
Begun in 1972 as a residential project in a dormitory-
similar programs in other California communities.
style setting, this project entered a second phase with
Michigan and Massachusetts have also used Innovation
housing clusters in apartments in different sections of
and Expansion funding to seed the development of
Houston. The project initially tested ways disabled
community-based independent living programs run by
persons could share services, such as attendants and
self-help organizations.
transportation. It also attempted to assess the changes
this different lifestyle would bring in resident behavior
PROBLEMS IN FINDING HOUSING
and attitudes. The results documented changes in physi-
ALTERNATIVES
cal independence, medical status, educational and/or
vocational activities, leisure activities, social relation-
Many obstacles exist to creating housing alternatives
ships, patterns of interaction, economic status, and atti-
for disabled individuals. First housing must be adapted
tudes.
as much as necessary for the handicapped person to live
By Sept. 1975, all residents had moved from the
as independently as possible.
dormitory building to apartment clusters in the commu-
In many projects resident employment earnings must
nity or into individual living arrangements. As an out-
meet at least part of the costs. Thus for many, employ-
growth of this program, four housing clusters were de-
ment or other substantial income becomes a necessary
veloped in community apartments.
condition for successful independent living. The major-
A second major outgrowth of the original Cooperative
ity of residents of the various housing alternatives are
Living project is a 6-week live-in transitional program to
either in school or employed.
teach independent living skills. This project, called New
Attendant Care
Options, offers training modules in living arrangements,
attendant management, financial management, function-
Recruiting and keeping the attendants who provide
al skills, sexuality, consumer affairs, mobility, medical
the necessary supportive services is a problem that has
needs, leisure time, and vocational/educational oppor-
not been solved completely. Usually the salary offered is
tunities. The program emphasizes field trip experience,
not enough to make being an attendant an attractive
and active handicapped persons from the community
career choice. Projects located at or near colleges and
lead many program activities.
universities have succeeded in drawing a sufficient pool
of attendants from the student population.
TOTAL COMMUNITY INTEGRATION
Southern Illinois University-Carbondale, which has
600 blind and physically disabled students, offers two
Center for Independent Living (CIL)-Berkeley
credit hours per semester for being a good attendant.
Generally considered the country's most effective self-
Credit is based on evaluation by the disabled person and
help program for physically handicapped persons, this
two counselors. Some success has also come from using
innovative program was created and directed by and for
mentally retarded persons as attendants for physically
physically disabled and blind persons. It does not offer a
handicapped persons.
residential center. Instead, CIL members live throughout
A program at Woodrow Wilson Rehabilitation Cen-
ter, Fishersville, VA, is one of several that teach handi-
the community in homes and apartments. The program
was founded in 1972 as a logical outgrowth of the
capped individuals to carry out procedures themselves or
Physically Disabled Students' Program at the University
be able to tell anyone how to do them. The program
of Calfornia, Berkeley.
works on the theory that a well-trained quadriplegic
The Center provides many services. Attendant referral
individual will never need a highly-skilled attendant.
counselors match prospective attendants with clients and
Funding for consumer-directed attendant care or per-
give advice on hiring, firing, and training. Counselors
sonal care is available in a few states and from such other
and specialists assist the clients in advocacy, job devel-
sources as Social Security, the Department of Vocation-
opment, independent skills living, health and mainte-
al Rehabilitation, Medicaid, and Social Services.
nance, and using community resources. A housing
department helps clients find places to live and facili-
Transportation
tates any necessary housing modifications. The Blind
Transportation, a key to severely handicapped indi-
Services Department provides special services for blind
viduals' access to the community mainstream, is still not
clients. In addition to a transportation system that
completely satisfactory. Although most projects offer
makes vans with hydraulic lifts available throughout the
some transportation assistance, it does not always meet
area, the Center provides a wheelchair repair shop that
all needs. Few residents of Houston's Cooperative Liv-
services both manual and electric wheelchairs. Mechan-
ing Project were entirely satisfied with their transporta-
ics of an automotive and machine shop conduct classes
tion arrangements, and this dissatisfaction seems typical.
for staff and clients in vehicle maintenance, and they also
Efforts to make public transportation more responsive
service all CIL vehicles. The Communications Depart-
to the needs of handicapped persons should have some
ment publishes The Independent, a quarterly magazine
impact on the current requirement for special transpor-
with a national circulation.
tation as part of independent living programs.
RESULTS OF EXPERIMENTS IN
IMPLICATIONS
ALTERNATIVE HOUSING
Legislation and regulations should be altered to
make it easier to establish independent living facilities for
Sheltered housing is a viable alternative to institu-
handicapped individuals. Legislation to provide front
tionalization. A HUD project, the Highland Heights
money for staff and services could assist in starting new
Experiment with barrier-free apartments found that type
centers. And providing funds directly to the disabled
of housing more efficiently utilized medical care facilities
individual would enable him to select and hire his own
and services and reduced unnecessary and costly
personal care provider.
institutional care. Results of the other housing projects
Large group facilities are undesirable because they
support this finding.
become institutional as their residents grow gradually
more dependent and isolated.
Social contacts and activities, functional status, and
A correlation exists between a handicapped
health status improve with independent living. The results
person's housing situation and vocational productivity.
of the Houston Cooperative Living project clearly
The results of the Houston project support the trend
support this conclusion. And the most dramatic results
reported by the Berkeley Center for Independent Living
toward helping persons with severe handicaps move out
of institutions and into the community. They also
were in the area of preventive care. The incidence of pres-
indicated, however, that making the transition into the
sure sores and urinary infections dropped to almost zero.
community can be difficult.
Independent living costs less than institutionaliza-
tion. In 1975, total monthly living costs for a resident of
The degree of physical disability is not a way of
Houston's Cooperative Linving project were $570. The
predicting success in independent living situations. First
monthly cost of nursing home care was $743, and an
to be placed in the Boston Center for Independent Living
apartment with private attendant cost $840. These costs
were quadriplegic persons. One could move only his head,
include rent, meals, attendant, transportation, and
and another needed a respirator.
personal expenses.
Each community should attempt to offer severely
handicapped persons an opportunity to get out of nursing
Independent living affords more employment op-
homes and into more independent living.
portunities than institutionalization. Of the 40 residents
in Houston's Cooperative Living project, none had jobs
Rehabilitation programs should teach more effective
before entering the project, but 28 had either full or part
independent living skills. The Houston project found
time jobs after entering the project.
necessary the ability to manage finances, to locate com-
munity resources and manage these contacts skillfully,
Independent living in a group facility gives residents
and to manage social relationships with persons who
more social closeness, providing emotional support and
provide physical assistance.
modeling opportunities. But many persons object to
being segregated from the rest of society. Houston's
Rehabilitation practitioners should work with self-
follow-up study found that residents of the Cooperative
help organizations of disabled persons to develop
Living project, dorms, and nursing homes had more
community-based independent living programs. Presi-
social closeness, which fostered group cohesion and some
dent Carter's position paper "Jimmy Carter on Ameri-
degree of conflict. Frequently, as they gain self-
cans with Disabilities" states, "We must broaden the
confidence, group residents outgrow the need for
traditional concepts of rehabilitation to include inde-
closeness and choose to move out into the community.
pendent living as a supported rehabilitation objective."
There are advantages of both shared and private
attendants. In the Cooperative Living project, private
REFERENCES
attendants gave the resident control over the attendant's
time, but with shared attendant services, there was less
Corcoran, Paul, et al. The BCIL Report. Boston, Mass.: Tufts/New
conflict because no two persons spent a lot of time
England Medical Center, 1977.
Fay, Frederick A. Housing Alternatives for Individuals with Spinal
together, and costs were reduced.
Cord Injury. Tufts New England Medical Center Rehabilitation
The location of a group residence in the community
Institute, 1977.
Greenstein, Deborah, Charles Gueli, and Edmond Leonard. No One at
is important. Most of the Cooperative Living residents
Home-A Brief Review of Housing for Handicapped Persons in
felt that part of the solution to transportation problems
Some European Countries. Rehabilitation Literature, 1976, 37(1), 2-
lay in locating their residence in a neighborhood that
9.
offered contact with the mainstream of society and that
Laurie, Gini. Housing and Home Services for the Disabled: Guidelines
was within wheelchair rolling distance of business and
and Experiences in Independent Living. Hagerstown, Maryland:
Harper & Rowe, 1977.
community facilities.
McEwen, Jan. Center for Independent Living: An Overview. Rehabili-
The successes of all the housing alternatives indicate
tation Counseling Bulletin, 1976, 19(4), 616-619.
the need for diversity of housing options. There is no one
Pflueger, Susan. Independent Living: Emerging Issues in Rehabilita-
tion. Washington, D.C.: Institute for Research Utilization, 1977.
best alternative. Different individuals are comfortable in
(RSA Grant 22-P-59019).
various settings, and it is important that handicapped
persons have a range of choices.
Copies of the BRIEF are available from UF-RRI.
Prepared by Rehabilitation Research Institute
College of Health Related Professions
University of Florida
Gainesville, Florida 32610
SECOND GENERATION INDEPENDENT LIVING PROJECTS - WEST COAST
By
Bruce M. Brown
Bruce M. Brown
Califórnia State Department
of Rehabilitation
830 "K" Street Mall
Sacramento, CA 95814
Bruce M. Brown
California State Department
of Rehabilitation
830 "K" Street Mall
Sacramento, CA 95814
(916) 445-9586
SECOND GENERATION INDEPENDENT LIVING PROJECTS - WEST COAST
By
Bruce M. Brown
Gaps and Continuities
Where generations exist so do gaps which separate them and conti-
nuities which link them. Independent Living organizations of severely
disabled people put a premium on independence. They are not willing to
work as shadows of any progenitor organization, regardless of the debt
they recognize or the appreciation they feel. Each will create its own
individuality as a separate undertaking by new people in a new setting.
New Independent Living groups are also conscious, however, that they are
part of a movement and that they draw strength both from their more
solidly established precursors and their contemporaries.
Independent living for severely physically disabled people started
in California with the new kind of social organization and collective
Brown - Second
-2--
activity that disabled people created in Berkeley over a period of about
ten years. Now the products of this activity are being transplanted or
grown from seed in at least eighteen new California locations. The issues
and questions we have identified for our study of the California ILF
experience are, "What does it take for success in a second generation of
ILPs?", and "What is success for ILPs?".
CIL Berkeley: The First
The organization that stands in history as the one and only first
generation California independent living program, Berkeley Center for
Independent Living, went through an experience that can safely be termed
unrepeatable, since by definition there can be only one first experience
pf a kind. So CIL's beginnings had several important features that were
unique among the developing ILPs.
Before Berkeley CIL ever became recognized as an "independent living
program" its founders experienced several years of increasing group ac-
tivity and organization. No one knew what specific result this activity
would lead to, much less that a special new kind of service organization
was being created. These preparatory events took place in a closely knit
group of severely disabled people on and near the University of California
campus. The University, along with the California Department of Rehabili-
tation, were sponsors of the group's coming into existence but they had
only the most modest and indefinite expectations about what their help
would produce.
Roots of the, Movement
In 1962 and 1963 two quadriplegic men, Edward Roberts and John
Hessler, were admitted to the University as part of an experiment that
would allow them to live on campus, away from their family homes. This
Brown - Second Generation
-3-
unprecedented and risky step was based on their taking campus residence
in a carefully controlled medical setting at the Cowell Student Health
Service Hospital. After two years they were joined by a third quadriplegic
student, and in the next year by five more equally disabled persons.
It was the "carefully controlled" aspect of hospital life at Cowell
which most contributed to developments that followed. Hospital regimen
proved to be more of an incitement to change than a protection to the
project's beneficiaries. Members of the disabled resident group began
acting together to get more control of their lives, beginning in the hos-
pital situation, then expanding to other situations.
The severely disabled individuals at Cowell were clients of the
California Department of Rehabilitation (DR) and beneficiaries of Aid to
Disabled and Medicaid. By carefully studying and insistently using their
entitlements, with support of their DR counselor, they were able to hire
personal attendants, reimburse the University for a substantial part of
their extra living and medical costs, pay their educational expenses, and
have a little spending money left. By learning how to care for their own
physical health and being mentally motivated to do it, they showed them-
selves less delicate physically than anyone had imagined.
By 1970 there were twelve Cowell residents in the project, as well as
five ex-resident students living off campus on their own. At the end of
the 1970 academic year success came to the wildly mad notion that disabled
students could get a federal Office of Education grant and become providers
of official University services to disabled students. Thus, the UC Berkeley
Physically Disabled Students Program (PDSP) came into being.
A New Social Invention
Having no real precedents to guide or limit them, the designers of
Brown - Second Generation
-4-
PDSP relied on their own experience. They built things into the program
which they had found they needed to make life liveable and hopeful enough
to be worth working and studying for. Getting financial and medical bene-
fits to survive on, finding dependable attendants through a referral
system, getting power wheelchairs and keeping them in operation, having
help in finding housing outside Cowell Hospital's relatively constraining
environment -- these were the basic components which went into the PDSP
services system. Control of this service program by its disabled consumers
was another key concept, made possible in PDSP by the Cowell Project group's
having brought the grant to the University. One decision made by the PDSP
leaders shaped the program's character significantly; they would not try to
establish another large group living facility off campus. Accessible
private off-campus rentals, with personal or shared attendants, was the
chosen alternative to living at Cowell.
This alternative was becoming an earlier and earlier choice of many
severely disabled students who were being admitted to Cowell in steadily
increasing numbers. The typical stay in hospital residence, which had been
six years at the beginning, shortened to one year for many by 1969.
Going Off Campus
Seeing the unique services offered to physically disabled students
through the University in PDSP, many non-student citizens in Berkeley who
were severely physically disabled began to seek PDSP services. Initially,
the project took a relaxed attitude toward these "outsiders", but the
recurring thought of a possible audit of the grant made project personnel
increasingly uncomfortable.
An off-campus organization was conceived as the logical solution to
this problem by PDSP. A growing number of severely disabled UC alumni in
Brown - Second Generation
-5-
Berkeley included many people with leadership and organizational abilities.
This was also true of some disabled people in Berkeley who had not been UC
students. Director John Hessler and others from PDSP brought some of these
people together in late 1971. Out of this effort came the first community
independent living organization, with Larry Biscamp and Philip Draper as
its elected leaders, using "independent living" officially for the first
time to describe the nature and purpose of the support services system
put together in PDSP.
The new organization began with loaned office space in the house where
PDSP had its office near the campus. Its only assets were the founders'
spare time, a few volunteers' labor, and an amazing record of accomplish-
ment since the Cowell project began. With no more than this, the organizers
boldly named their new creation a "center": "The Center for Independent
Living".
The New Center
Independence from the University and a completely new start in the
Berkeley community left CIL free to choose any form of organization and
any balance of politics and advocacy in relation to direct services. Its
first year's support was largely from an RSA planning grant, which con-
ferred the freedom to plan, rather than demanding immediate production of
services and results.
One of the first decisions by CIL was made when they found that young
blind people in the University area wanted independence and mobility in
ways similar to themselves and were willing to join forces as partners in
the CIL organization. Interested blind leaders and blind services were
given a guaranteed place in CIL from that time on and coalition became a
policy.
Brown - Second Generation
-6-
After several months of planning, CIL's proposal for an expanded
system of IL services was drawn up to provide: (1) recruitment, training
and referral services to help make good attendants (for orthopedics) and
readers (for blind) more available; (2) an accessible housing survey and
referral service; (3) wheelchair repair services; (4) -mobility and indepen-
dence training for blind persons; (5) van transportation which would carry
people in wheelchairs; (6) financial aids counseling and advocacy for
individuals; (7) independent living skills (occupational therapy training
for personal care and living); and (8) community action and other public
advocacy efforts related to these and other areas.
Essentials for Success
When the Center went into operation in 1972 they concentrated on
those service areas considered indispensible to independent survival for
the severely disabled: attendant/reader referral, housing referral,
transportation, financial advocacy, and community action/public advocacy.
But it was not the services provided that made CIL a new social invention.
It was the concept which CIL inherited from PDSP of having such services
in an integrated system, controlled by the disabled themselves, and not
tied to a group residence. These concepts remain the essence of indepen-
dent living programs for the severely disabled in California.
Lean Years
Despite the dramatic appeal of the accomplishments of CIL and its
leaders, the new organization was headed into hard times financially. It
started with $50,000 of RSA facilities planning money granted on the basis
of its striking novelty and potential. But in an era when money approp-
riated to HEW was being held back and stretched to its limits, there would
be two years before any more federal money came CIL's way.
Brown - Second Generation
-7-
Survival was accomplished by piecing together small amounts of city
rent money, county client services payments, University money, and private
gifts from individuals and foundations. Staff and some other leaders
lived for months on a subsistence level in an apartment which also served
as CIL's office. At times prospects for funding looked so grim that moving
back into a shared office-with PDSP seemed inevitable. It was not until
after Ed Roberts' return to Berkeley and his appointment as the second CIL
Director that lack of funds ceased to be an acute crisis.
The Right Time and Place
Being in Berkeley in 1972, CIL was well located to benefit from the
collective gains of the equal rights and equal opportunity movements in
which other people from Blacks in the 'fifties to women in the 'seventies
had won recognition and redress. Minorities and stigmatized people of
many kinds were no longer ashamed and apologètic about themselves and were
achieving a sense of positive group identity. It was an era of "movements":
mind-expansion, self-realization, non-violence, consumerism and sexual
freedom, among others. But an especially important influence came from
the self-help therapy movements and other organizations modelled after
Alcoholics Anonymous, such as self-help drug treatment groups. The self-
help concept spread to movements for sufferers from a multitude of diseases,
handicaps and problems. Thus the path for a self-help group of severely
physically disabled people in California, while not smooth, was well worn
by predecessor and companion groups.
A Boost from State Government
In 1974, campaigning on a platform that promised more attention to
people on the bottom of the heap, Edmund G. Brown, Jr. was elected Governor
of California. As Governor, Brown used his appointive powers consistently
Brown Second Generation
-8-
with the spirit of his campaign, and Edward Roberts, who had become Director
of CIL in 1974, was appointed to head the State Department of Rehabilitation.
- Roberts had been impaired at age 14 by polio, which all but totally destroyed
his limb and hand functioning and seriously hampered his breathing. As a
leading supporter and contributor to PDSP and CIL in Berkeley he strongly
favored the independent living concept. He was also a living example of
what could be accomplished by a severely disabled individual.
When he became DR Director, Roberts first took organizational steps to
re-emphasize services to severely disabled people as mandated by the Rehabili-
tation Act of 1973. Then he used resources available in his department to
open the way for more government support to IL programs in California. He
began by allocating more than $700,000 in federal Innovation and Expansion
(I&E) grant funds to ILPs. As his Assistant Director, Roberts appointed
John Hessler, who had founded and directed PDSP and was a founder of CIL.
Hessler's main task for six months was setting directions for grants and de-
velopmental work with ILPs. Only after this was administration of the IL
grant program fully turned over to the Community Resources Specialists who
regularly managed grants to rehabilitation facilities and workshops.
The Second Generation
Severely disabled people in California who were eager to start ILPs
in their communities began organizing and applying for the funds which
the Department could make available for IL organizations in 1976-77. Ten
applications were received and nine applicant ILP organizations were
awarded grant funds averaging $72,000 each for the first year. The or-
ganization whichfailed to receive an I&E grant, plus others which had
begun activity but did not apply, and one which started too late to compete,
all had to rely on other sources of support. TWO of these developing ILPs
Prown - Second Generation
-9-
were already receiving substantial grants from county government and were
able to continue on this basis. They were later joined by one other simi-
larly funded project.
The other six second generation California ILPS followed another path,
that of searching out what assistance they could find in their municipali-
ties for getting started. They found Comprehensive Employment and Training
Act (CETA) public service jobs, unused city-owned building space, and small
appropriations of city money to be the best available resources for starting
ILPs. The ad hoc approach to funding and concentration on local sources
used by these groups is reminiscent of the first years of CIL in many ways,
especially in that their growth was more incremental than that of the
grant-funded second generation ILPs. Growth occurred gradually as new
positions, space and funds were obtained, rather than all at once in a
full blown organization and program structure to meet the demands of a
single grant award.
Cross Generational Continuities
The second generation California ILPs have now existed for two years.
It is now possible to identify some features which have remained generally
continuous across the generations, as well as the differences between the
early experience of these new ILPs and the first years of CIL. Of charac-
teristics common to ILPs through both generations, the most significant
involve campus contributions, private organization, consumer control,
non-residential orientation, and multi-disability group coalitions.
The Contribution of the Campus
Jobs for university trained severely disabled people were created
when the college and university systems in California funded and mandated
positions of Coordinator for Disabled Services on each campus. Through
Brown - Second Generation
-10-
these jobs, individuals trained in Berkeley's PDSP and CIL and also in the
California Association of Physically Handicapped (CAPH) were seeded in
communities throughout the state and given bases to work from in programs
which usually included independent living services for students. Community
interest and service requests from non-students usually followed. The
campus co-ordinators and the student groups they developed then often pro-
vided the initiative and the staff recruits for community ILP organizations
when they were later begun.
All in the Private Sector
The idea of having a government agency set up and run independent
living projects in California was never considered; at least there is no
record of such a proposal. Starting with CIL, disabled individuals formed
autonomous organizations of their own; or, if necessary, they joined
forces with an existing private organization to create an ILP. Only then
did they zero in on government agencies for financial and material support.
Most ILPs in California are autonomously incorporated. Existing
private organizations, other than CAPH chapters, have sponsored ILPs
where an initial "grubstake" or matching money for a large grant was
needed. In these cases, relative or total autonomy for the ILP is part
of a future plan.
Disabled in the Driver's Seat
A board of directors and a top staff composed of severely disabled
people were part of CIL from the start. In the second generation this has
continued, at least to the extent of there being a strong majority of
severely disabled members on the board and/or a severely disabled director
of the ILP. In cases where a larger sponsoring organization with its own
board and executive director is the recipient of an ILP grant, the ILP's
Brown - Second Generation
-11-
board with a disabled majority sometimes serves as an advisory body and
its director as a program manager. Thus a governing voice in these ILPs
remains with people who live 24 hours a day with problems of severe physi-
cal disability. Despite the energy limitations which often go with such
disabilities, the inescapable nature of the problems has engendered a
tenacity and a high involvement with solving them which account for much
of the inventiveness and creativity in programs and services offered by'
ILPs.
Not a Place to Live
California's severely disabled members of independent living organi-
zations do not depend on being provided special group living facilities,
even though this might be one alternative to offer when good accessible
housing is scarce. They have entitlement through various public aid pro-
grams to the means they need to arrange their own living situations. They
need only the help of basic services such as consumer advocacy, housing
survey and referral service and help with attendants to exercise this
entitlement. Some advantages which ILPS cite as accruing from the non-
residential approach are that: (1) conflicting interests of being both
tenant advocates and landlords are avoided; (2) burdens and chores of
property management do not tie up program energies which might go toward
IL services and advocacy; (3) ILPs, which already provide a great deal of
the social, political and work life for many members, remain less of a
total environment for them than if they lacked their own separate resi-
dences.
More Than Wheelchairs
CIL broke some precedents when it formed a joint organization of
Brown - Second Generation
-12-
young blind and orthopedic-motor disabled. Later, deaf people and deaf
groups were contacted and added their participation to CIL and most other
California ILPs. These actions established a principle of coalition rather
than competition among disability groups which has been followed generally
in the California IL movement:
Differences Between Generations
A generation gap is the product of the experiential differences
between those who came earlier and later in history. Recent ILPs began
in circumstances that more resemble the contemporary 1978 situation at
Berkeley and CIL than they do the situation CIL was in during its first
two years.
From the start, the second generation ILPs have had tenuous group
bonds and uncertain impetus as a movement. Also, the new ILP organizations
have necessarily begun working, as CIL does today, with less select cross
sections of severely disabled people than those found in Berkeley in the
early 1970's. And the new ILPs have certainly missed any chance to be
"sleepers" and surprise the world with great results when little is
expected.
The new generation is cutting its teeth on problems of maturity
without having had the formative experience which shaped the first genera-
tion. The question now is whether they can maintain enough of the distinc-
tive features of ILPs to keep their special value and effectiveness.
Initial Substitutes for Group Strength
In CIL's experience, formation of a community ILP did not begin
until a cohesive group of severely disabled people had already existed in
Berkeley for several years. If anything, later development and success
somewhat eroded the initial group strengths in CIL. ILPs in the second
Brown - Second Generation
-13-
generation, by contrast, were started before their social underpinnings
were firmly established.
Existence and activity of California Association of Physically Handi-
capped chapters came before the growth of the ILP in several areas. These
were the strongest beginnings toward developing communities of severely
disabled people in those places at the time. There was also at least one
founder in several ILP sites who had significant personal experiences with
Berkeley CIL and who knew from this the kind of group base and movement
character they could aspire to. Though important, in the second generation
these assets did not begin to compare with the social substructure which
CIL had at its beginning.
There were at least three observable consequences to the new ILPs of
having been organized before their social group and social movement bases
became well developed. First, in the absence of these strengths, some
other resources outside and inside the ILPs had to be called on to carry
their developmental load. Second, the very fact. of calling on outside
local resources required, at least temporarily, that ILPs accept some
accomodation to the views of their local helpers. And third, formal pro-
gram devices had to be added internally to substitute for the informal
group resources which were not developed.
Coming to Terms with Older Local Leadership
Before an "independent living movement" of severely physically disabled
people ever existed, there were a minority of the severely disabled who
were able not only to survive but to make relatively independent lives for
themselves. These individuals were often active in their communities as
leaders, speaking for other physically disabled people. They had not been
Brown - Second Generation
-14-
centrally involved in CIL, which had developed near a university campus
and was based on a much younger self-contained group of leaders.
Many of the younger disabled people had become conscious of themselves
as "outsiders", removed from security and from full participation in life.
They were strongly inclined to be activists, with at least a trace of
radicalism. These people felt strongly about social justice, as exemplified
by the sit-ins which were organized in 1977 to influence signing of the
Rehabilitation Act Section 504 regulations.
Along with many other fair-minded people, however, some of the older
leaders among disabled persons viewed the radical style in Berkeley with
unease and misgivings, mixed with unavoidable admiration for its potency
and success. The 1977 sit-ins were not a comfortable time for many disabled
people who had come to reasonably good terms with society as it was.
Organizers of many of the second generation ILPs in California have
necessarily included pre-1975 disabled leaders. Once organized, the ILPs
found they continued to need the confidence, help and support of the older
disabled leadership who were already active and working in their communities.
These "old hands" were important as experienced board members, knowledge-
able and influential fund raisers and skilled volunteers in special capaci-
ties. But there was a price to pay for including these more experienced
and established leaders. Their priorities leaned more toward direct
services than the community advocacy and political action that the younger
activists preferred. This has probably been less true of those non-grant
based ILPs which had an opportunity to develop more slowly and carefully
and to be more selective, choosing allies in line with their own inclinations.
For a few second generation ILPs, the necessary organizational founda-
tions came from an established group or agency which sponsored and gave its
Brown - Second Generation
-15-
name to the new venture, or actually made the ILP a unit within the parent
organization. This type of arrangement required an ability to work under
the sponsor's board and executive director, to accept their administration
and their management of money, and to tolerate their often non-militant
approaches to program and politics.
Programmed Substitutes for Natural Group Experiences
A closely knit group which partakes of a social movement, such as the
movement for "disabled rights", and which works closely on its members'
individual and collective problems doesn't require much in the way of a
special program or administrative structure. Members of such a close
peer group can, for instance, advise, counsel, support and nurture one another;
they can provide models, inspiration and hope to one another without a pro-
gram called "peer counseling", and without a special peer counseling co-
ordinator and staff of employees or volunteers. What happens, happens
"naturally" because of the closeness of the group and the clear direction
of its movement.
On the other hand, an organization which is set up without any
strong pre-existing group or close community of real peers does have a
need to add some formal program provisions from the beginning in order to
accomplish these same things. This is also true in various degrees for
community and political advocacy, for help in getting fair assistance from
Welfare, Social Security and Rehabilitation, and for helping people find
attendants and apartments.
In Berkeley, group cohesion and momentum of the movement at CIL's
founding held off formal organization of many services and procedures
until size and increasing complexities in CIL forced the issue. Second
generation ILPs which were set up rapidly with I&E grants have had to assume
Brown - Second Generation
-16-
the shape of formalized service programs much earlier in their existence
than CIL did. The most apparent generational difference that results is
that a concentrated effort to construct formal programs and get them
running tends to detract from the political advocacy function of the pro-
jects.
Enter Intake and Evaluation
As the ILP movement grew, SO did the number of disabled persons applying
for services. With this increased demand came a new problem - dealing with
more individuals who were not really ready for the servicesthe ILPs had to
offer. The first generation at CIL started with a select population of
highly talented severely disabled people who were already mobilized. These
people had been attracted to Berkeley from all over the state and nation.
Only after they were well developed did CIL have to deal with less ready
applicants for services.
But the second generation ILPs were faced with the dilemma of "unready"
applicants from their earliest beginnings. Making judgements about "need
and readiness" and applying them to the requests of fellow severely
disabled persons does not come easily to an egalitarian ILP staff member.
However, to see one's work in lining up an apartment or an attendant
repeatedly "blown" by the person who is basically unready for these ex-
periences and responsibilities is also hard to take. Initially the social
agency idea of specialized "intake" assignments and a separate function of
evaluating newcomers and their needs, seemed too "bureaucratic" to the
California ILPs. Yet it is a solution which most have had to adopt.
The worst effect of "unready" applicants is a preoccupation with
crisis situations, leaving the ILP with few resources to support long term
independence goals. This problem is most apt to be acute in urban core
Brown - Second Generation
-17-
areas where severely disabled people frequently get stuck without adequate
shelter, food or attendant care. One downtown ILP, using tough but realis-
tic intake and referral procedures, saved itself from being pulled under
by this problem through insisting that other crisis-meeting agencies in
the city serve the severely disabled people who have the same problems of
transience and marginal existence as their able-bodied counterparts.
Ideally, an ILP has an array of services to fit a wide range of
readiness. The experienced and perceptive intake counselor can see that
some services are more appropriate for the newcomer than the things which
the person may ask for. Such use of superior knowledge and judgement does,
however, depart from the peer group ideal of equality. Follow-up contacts
to see if individuals carry through and don't get lost in the service
system are also effective, but may leave workers feeling more like parents
or sheep dogs than peers.
Upgrading IL Feasibility
Second generation ILP programs give "counseling" an explicit and
prominent place among their activities. The most commonly described un-
readiness of applicants to use ILP services is psychological-social unreadi-
ness; counseling is the most commonly planned corrective. In the early
days of CIL, formally constituted counseling services did not appear to be
necessary, so they were not offered.
In the second generation ILPs, people who would have been considered
"unready" in the early days are now probably the typical ones being worked
with. Whether or not there should be counseling is seldom questioned.
The questions which do surround the function are, "What kind of counseling
is needed most and which works best in an ILP?", or "What differentiates
Brown - Second Generation
-18-
peer counseling from professional counseling?", and "How much emotional
working-through should be included, relative to a practical problem solving
emphasis?"
Living with a Timetable
Structured external expectations have an important effect on those
second generation ILPs which get their main support from grants. Others
may be less affected because their financial eggs are not so much in a
one-source basket, but they are still liable to be held accountable for the
resources they are given- This will increase as the concept and general
expectations of ILPs become more widely known.
It is the fact of the grant, however, its monitoring and renewal, and
the pressure imposed by its time and sharing limits which most affect the
grant funded ILPs. I&E grants in California put the recipient on an implied
three year timetable to self sufficiency, with support decreasing from 90
percent to 80 percent to 60 percent to nothing. The clock ticks and the
sponsor watches and expects results.
Search for Executive Ability
The second generation ILPs were started with expectations that they
would organize themselves promptly and start efficiently to generate
reportable results. Effective organizational leadership and administra-
tion are essential under these circumstances, given the narrow margin of
economic survival in these organizations. Even the commitment of their
members, their greatest and most valuable asset, can be eroded through
inept management. Therefore, the ILPs had to search out the most experi-
enced and skilled managers and executive leaders who could be found. For
the ILPs with grant money this may be both more possible and more neces-
sary than for those with other sources of funding.
Brown - Second Generation
-19-
The ideal for filling these administrative positions is to find a
highly capable administrator who is also severely disabled. However, it
is not always possible to combine these two qualities in one candidate;
in such cases preference has to be given to the skilled manager. The only
available compromise occurs when the job can be split up and divided be-
tween two people, one of whom is disabled. But in cases where practical
necessity dictates the hiring of able-bodied directors, feelings of incon-
sistency and misgiving still result and are an ongoing problem.
Conclusion: Success and Survival Questions
Answering the questions which began this article requires a defini-
tion of "success". Success for an ILP is surviving as an organization.
That means at least paying the rent and the staff, because failing in
these things writes "finis" to the story. But it also means effectively
and dependably turning out the services which severely disabled people in
the community need to get and stay independent week after week. These
things are the survival test of a good organization.
However, success for an ILP also means surviving as a movement and as
a group. If the activity of ILPs becomes too cautious about stepping on
(or rolling over) toes, or if it becomes too impersonal to allow partici-
pants to spend time joking and sharing with one another, then success in
the ILPs' original sense of it will have eluded them. This part of
success may be harder to attain and retain than organizational survival
alone and may even be endangered by concern for organizational solvency
and productiveness.
From the writer's location on the West Coast, at the start of, rather
than the conclusion of, a research study about ILPs, it seems likely that
important keys to this second part of survival for ILPs are hidden among
Brown - Second Generation
-20-
some things they have in common. We have reviewed some of these and will
look at them more closely: at their affinity with the relatively unortho-
dox student world of the campus, at their organizational autonomy, at
their jealously guarded consumer control, at their avoidance as much as
possible of the cares and conflicts of landlordism, at their openness
to risk coalition with all disabled people in order to be strong in rela-
tion to the able-bodied, sighted, hearing world, and other commonalities
yet unidentified.
Another place our study will look for answers is at solutions which
ILPs find to discontinuity and rapid growth problems, such as those we
have pointed out in this article. How well can government foster the
start of intentional ILP organizations on a large scale without leaving
them SO lacking in social strength and determination of direction that
they are immediately unstable and prone to cautious and formalistic
answers to their survival problems? How well can ILP leaders and staffers
who are gaining a world of expertise in the work they do and in the
field they have invented, and seeing the whole ILP enterprise prosper,
not become too "professionalized"?
With their increasing knowledge and responsibilities, how well can
the leaders of the movement keep from becoming removed from the sub-world
of severely disabled who are still deteriorating hopelessly and often
ignorantly in outer darkness of convalescent hospitals, "homes", and
other confining dependency centers? With all the urgency of legislation
and politics and grants and appropriations and budgets and meetings, how
well can time be made for seeing validity in these people's individual
experiences, for listening to them and for talking with them outside of
appointment hours to get across the "fellow-human-being-like-me" message?
Brown- Second Generation
-21--
And how well can the rest of the world leave control and ownership of
ILPs to the severely disabled now that ILPs are accepted and sometimes
famous?
The answer to these questions is: only partially, since everyone
involved is human. The next question is: will the outcomes be such as to
permit ILPs to survive with their essentials intact? Our Independent
Living Research Study will deal descriptively with these questions, and we
hope to find some clues and answers in time to help make a difference in
the outcome.
# # #
Mr. Brown is a Senior Analyst in the Research Section of the California
State Department of Rehabilitation. He is currently serving as Director
of the Department's RSA-funded Independent Living Projects Study.
FOOTNOTES
1. The new work on which this article is partially based was done for an
RSA Research Grant, 15-F-59045/9, with Drs. Herbert Leibowitz and Leonard
Green as Project Coordinators for RSA. The author acknowledges the
special help given by members of the California Coalition of Independent
Living Centers and by California Department of Rehabilitation Assistant
Director, John Hessler, in assembling and evaluating information, and
the editorial decisions provided by Harry N. Greenblatt, Chief, and
Barbara L. Jones, Office Manager, of California Department of Rehabilita-
tion's Research Section.
2. From February 1968 to June 1970, an Innovation Grant from RSA to the
California Department of Rehabilitation paid, in part, for special
services to clients in the Cowell Hospital Project.
EXECUTIVE SUMMARY
OF THE
COMPREHENSIVE NEEDS STUDY OF
INDIVIDUALS WITH THE MOST SEVERE HANDICAPS
This report is submitted to the Department
of Health, Education and Welfare
by
The Urban Institute
in fulfillment of Contract No. SRS-74-54
June 10, 1975
THE URBAN INSTITUTE
2100 M Street, N.W., Washington, D.C. 20037
38
We would think that much of the financing of both VR and an ILR program
d be accomplished through the general health and income maintenance programs
inted out previously.
Lastly, in financing of a formula grant program of independent living,
consideration should be given to the possibility of client cost sharing
e some services provided under a program of this type might include those
ally provided by the individual--meal preparation, homemaking, recreational
vities, etc. Client cost sharing should include (1) payments associated with
lusion in the program and (2) payments associated with use of the program's
e benefits:
ependent Living Rehabilitation or Not
As contractors we can only suggest that the need for independent living
abilitation is there and that the rehabilitation system as it currently exists
ald provide such services as may be authorized. We were struck, however, by
C potential cost of such a program and the minimal authorizations proposed in
e previous bills. Given the focus in VR on the severely disabled, we would
iggest not beginning a formula grant program of independent living until a
inimum of $150 million per year can be assured to provide coverage just for
hose currently in contact with VR and not served due to severity. Any lesser
unds would be well spent in VR as it presently is structured. Congressional
Interest in an independent living program might be effectively expressed through
Ei- st mounting demonstration projects to work out the service delivery and coor-
di: ation issues until such time as funding for both VR and ILR is available.
The way to most easily accommodate a very modest program of independent living
is through expansion of extended evaluation. One small step would be to have all
per: ons thought to be infeasible due to the severity of their impairment go through
a full program of such services. We would exclude those who are not actually
but whose closure is based on other characteristics which
:
competitive placement difficult, such as age or inadequate education or skills.
st of these persons seem to have few limitations in self-care and mobility.
When so limiting the program, it is important to also establish new mea-
ures of success. At present a client closed from extended evaluation without
ocational rehabilitation is counted as a non-success despite the benefit received
rom services. Certainly measurable, successful independent living outcomes
can be defined: no longer needs attendant, can now travel alone, reduced need
For assistance in homemaking, and so forth.
If the ILR program were limited to those severely handicapped who get to
a VR Agency but who cannot be vocationally rehabilitated, it is possible to
avoid many programmatic issues concerning which services to provide, how to
interface with other delivery programs and, at the same time, recognize the
limitations of resources in dollars, facilities, and manpower. For 1972 we found
68,000 VR clients closed for severity. Our survey of VR clients showed 41 percent
had Barthel scores reflecting moderate to severe dependency due to their impair-
ment. If this applied across the board, there would have been about 27,000 clients
with limitations. For $80 million, about $3,000 per client would be available
for counselor and case service costs, as well as administrative costs.
If any initiative is to be mounted in new areas, we would propose it be
in the rehabilitation of persons in nursing homes and related long-term care
facilities. While many persons in these institutions need some level of care
and supervision, there are some who could be rehabilitated to their homes or
more congenial community settings if they got some rehabilitation services.
Movement to these settings could reduce outlays in Medicaid and Medicare for
these individuals and offset costs of rehabilitation services. Demonstrations
of the possibilities of such an approach prior to legislation would be desirable,
but if the reform of health and long-term care programs proceeds rapidly, we
40
eel the State-Federal rehabilitation program and/or CMRCs should be written
Ln, based on the face validity of the accomplishments in the field.
Summing Up
When we began this study VR loomed large. At the end we found that it
accounted for about 2 percent of Federal expenditures on the severely disabled. the
While its influence far outstrips that modest proportion, we wondered at
expectations people placed on the program without the corresponding willingness
to provide the resources.
Any exercise which approaches a population from the perspective of "needs" of
is very likely not only to find needs but also to find the associated costs
meeting those needs to be very expensive. To have a comprehensive program for
the severely disabled that comes anywhere near to living up to its name and
expectations would cost billions. The Congressional authorizations, much less
appropriations, belie the impulse. The $30 million first-year authorization
could be spent entirely on demonstration projects. The Nixon Administration
was, perhaps, more honest in saying it chose not to put up the resources, but
it failed in dealing with the consequences.
When Congress turns to VR to deal with the more severely handicapped,
several things happen. Whatever the merit of digging into the pool of more
severely handicapped, some of the traditional clients must be abandoned. These
are clients whom many consider quite worthy of services. But to serve the more
severe, given no additional resources, means something or someone has to go.
The next thing that happens is that the risk of failure mounts, not so much
because VR does not know how to rehabilitate but that the labor market does not
easily accommodate the more severely handicapped. The number of closures drop.
No matter that Congress may not mind, nor that good is done anyway. While
Congress may be willing to watch the number of rehabilitations drop with some
satisfaction that the more severely handicapped are better served, there is
Special Article
Housing? Or Housing Options???
MARIE McGUIRE THOMPSON and EDWARD H. NOAKES, AIA
Introduction
keynote speaker at the first National Conference on Hous-
ing and Handicapped Persons held in 1974.
A
NEW RECOGNITION that the housing needs
Recognizing the need for an architectural response to
of disabled persons cut across a wide range of
housing and other environmental needs of handicapped
options is broadening the approaches to resolving the
persons, Mr. Noakes initiated the first Task Force on
problems of adequate housing for handicapped per-
Barrier Free Design of the American Institute of Ar-
sons. The new approaches encompass efforts to
chitects and served as the first president of the National
deinstitutionalize severely disabled persons by de-
Center for a Barrier Free Environment, established in
veloping group-based residences as well as the pro-
1974 by the American Institute of Architects, the Na-
motion of adaptive housing to insure a freedom of
tional Easter Seal Society for Crippled Children and
choice in the community-at-large for less severely
Adults, and the President's Committee on Employment of
handicapped persons.
the Handicapped.
Two of the nation's best known authorities de-
He has testified on behalf of the American Institute of
scribed some current efforts that are based upon
Architects at Public Hearings on Housing conducted by
these principles at the 1976 Convention of the Na-
the Architectural and Transportation Barriers Com-
tional Easter Seal Society of Crippled Children and
pliance Board. As a member of the Executive Committee
Adults. This article summarizes papers presented by:
and Chairman of the Committee on Barrier Free Design
of the President's Committee on Employment of the
Mrs. Marie McGuire Thompson
Handicapped, be serves on the Secretariat of the American
Mrs. Thompson has been involved since 1942 in both
National Standards Institute for the project to develop de-
local and federal aspects of the design operation and man-
sign standards for accessibility in housing and other
agement aspects of housing for low-income persons, the el-
buildings for persons with handicaps.
derly, and handicapped people. In 1973 she began serving
He was the first recipient of the E. B. Whitten Silver
as housing specialist for the International Center of Social
Medallion, a national citation from the National Re-
Gerontology; she has conducted private consultations with
habilitation Association in recognition of his contribution
public and private developers on congregate housing and
to creating a nationwide environment free of barrier to
housing for persons with a range of handicapping condi-
handicapped persons.
tions, including physical handicap, developmental disabil-
ity, and mental retardation.
Summary of Paper by Mrs. Marie McGuire
From 1961 to 1967 she served as Commissioner of the
Thompson
Public Housing Administration, having been appointed
A project contracted by the U.S. Department of
to this position by President John F. Kennedy and con-
Health, Education, and Welfare (HEW) to the Na-
firmed by the Senate Committee on Banking and Cur-
tional Association of Housing and Redevelopment
rency on April 25, 1961.
Officials (NAHRO) aims at stimulating community
Currently she is serving as project director of a Health,
action by bringing builders, developers, and finance
Education, and Welfare (HEW) study on a local-action
agencies together with organizations serving the
plan for housing for the developmentally disabled in con-
handicapped to 1) convince the building professions
junction with the National Association of Housing and
of both the need and the existence of this strongly
Redevelopment Officials and is the author of a position
emerging housing market, and 2) convince the or-
paper on housing for the handicapped for the Mershon
ganizations and individuals concerned with the well-
Center, Obio State University, funded by HEW.
being of handicapped persons that the living ar-
rangement is an essential service toward attainment of
Mr. Edward H. Noakes
the normalization goal. There is little doubt that pub-
Edward H. Noakes, AIA, heads bis own architectural
lic and private developers are interested and want to
firm in Washington, D.C., where be specializes in the
know what is needed.
design of health facilities and housing for the aged and
To nonhousing organizations, the housing field ap-
the handicapped. He has authored several articles and a
pears to be a most complicated and frustrating maze
publication on planning such aspects of housing and was
(as indeed it is). However, once service organizations
106
REHABILITATION LITERATURE
SPECIAL ARTICLE
accept housing as one of the most basic services, then
counterparts, will be required to institute a series of
it seems to me that linkages between the building and
training sessions until finally there is at least a
service fields can be made and appropriate housing,
semblance of national coverage, a sharing of knowl-
even for the severely handicapped who need atten-
edge about resources available to achieve this too
dant or life-supportive services, will become part and
long delayed broad housing program.
parcel of the joint planning process.
To help bring this linkage about, a Guide entitled
T
here are numerous advocacy activities that can
Housing for the Handicapped and Disabled: a Local Ac-
result in use of a community's existing housing
tion Guide (available from National Association of
stock through adaptation or rehabilitation (the roles
Housing and Redevelopment Officials) has been de-
of both public and private developers and owners),
veloped under the NAHRO Project, sponsored by
the use of multifamily apartments or homes, and
the U.S. Department of Health, Education, and Wel-
other opportunities now existing in most com-
fare (HEW).
munities. Undoubtedly there are public or private
It is significant that it was a service-oriented branch
property owners in all communities willing to make
of the federal government such as HEW that per-
structural changes necessary to accommodate persons
ceived-housing as a service without-which many
using mobility aids if the situation-i brought to their
handicapped persons could not hope to achieve a
attention. Again, housing advocacy may result in pub-
normal life-style. This would indicate that national,
lic or private builders designing new housing specifi-
state, and local organizations who are service-
cally to make environmental coping possible, and
oriented, might rethink their function and add the liv-
thus increase housing options and supply. In the pro-
ing arrangement as an essential service and a base
vision of group housing for mentally retarded per-
from which other services can more readily be deliv-
sons, existing housing again can be used, for the goal
ered to more persons. Once this concept is accepted,
is small-group homes that simulate a family in both
more and more service-oriented groups will in fact
size and operation. Here, probably the most baffling
see to it that housing of one kind or another is part of
problems will be neighbor attitudes, plus zoning
their responsibility and will seek to advocate, spon-
complications, since in most communities antiquated
sor, or stimulate its production in any number of
zoning laws may not have accepted a small group of
ways.
unrelated persons as a "family." If small-group homes
The Guide is designed to suggest effective local ac-
are used for developmentally disabled persons who
tion in the housing field by organizations interested
may have both physical and mental functional handi-
in one or another type of handicapping condition. It
caps, the barrier-free design will be an added dimen-
sets forth as simply as possible the major steps in-
sion. In these cases, it is important, first of all, to de-
volved in developing or increasing housing oppor-
cide on what is the best housing solution for what
tunities for handicapped citizens in the communities
handicapped persons and relate the design and de-
of this country. It is written to and for persons who
velopment to the capacity of the residents.
heretofore have not been involved in the design and
Another advocacy activity is a search and find serv-
operation of housing with the hope that, being aware
ice. Locating housing that is usable by handicapped
of what is required to produce housing, groups in the
persons reduces the person's difficulty of getting
cities and towns of this country would undertake to
around town to find usable housing. Süch a local in-
provide it.
ventory, kept current, would be an enormously help-
One requirement of the contract on the Guide
ful service. In the course of making such a housing
called for its being tested by professionals, consum-
inventory, note also should be taken of those dwell-
ers, and citizens in three localities, each to critique it
ings that could be used by certain handicapped per-
in terms of their local interest in a particular handi-
sons if minor adaptations are made and barriers re-
capping condition. In this way, the local point of view
moved. To provide housing without responsibility for
with respect to its applicability to their needs would
the capital cost, organizations might lease public or
be tapped. These critiques are a valuable addition to
private dwellings, the agency then subleasing to
the body of knowledge and opinion of professionals
handicapped clients. Rent supplements for low-
and consumers in the kinds of living arrangements
income persons will be covered and the leasing of
most acceptable to them and to their communities.
private properties in many parts of the city will be
Using the Guide as a basic text, a training institute
covered as another potential. Organizations may
will follow to train some 50 persons in its use and its
handle the leasing arrangements, rent collection, and
applicability to their organization's housing efforts
maintenance, or they may prefer to leave these opera-
and to the efforts of any interested community. Or-
tional aspects to the owner.
ganizations, through their state, regional, or local
Local service organizations are recognizing that
APRIL, 1977, Vol. 38, No. 4
107
SPECIAL ARTICLE
normalization can come about only in an appropriate
(HUD) recognized this when it undertook the proj-
community-based living arrangement. While many
ect to revise the design standards for accessibility and
states are deinstitutionalizing their handicapped or
expand them to include housing. The soon-to-be
elderly patients, few have a local plan that can pro-
completed project is particularly noteworthy for en-
vide appropriate housing with services needed to sus-
dorsing and promoting the concept of adaptable hous-
tain the severely handicapped in independence. Cruel
ing.
and unusual punishment may result. But, thanks to
The term adaptable means simply that if you are
the development of new planning aids, assistance is at
fully able to cope with all the parts of your housing,
hand.
including bathrooms and kitchens, it would simply
present you with greater ease and safety and conven-
ience. If and when you lost your coping ability and,
Summary of Paper by Mr. Edward N. Noakes
say, ended up in a wheelchair, your home could adapt
Given the mandates of recent laws affecting per-
to your needs. Proper door widths and swings would
sons with disabilities, adequate housing should
already be in place as would proper storage, closets,
quickly become recognized as a prerequisite for all
and electrical outlets. If, for whatever reason, you
other activities of life, particularly the employment of
needed the oven top, sink, or counter to be lower, it
handicapped persons. In a sense, housing is basic to
could be easily and inexpensively done. Space would
our total social structure, reflecting both psychologi-
be in your bathroom for your wheelchair. If you got
cal (inter-relationships) and economic aspects of our
arthritis, door latchs, window pulls, and all the other
lives. Yet today we have no national policy to guide
things you operate with your fingers (like taps) nor-
the implementation of these concepts when it comes
mally could be operated without pinching, pulling, or
to providing housing options for persons with handi-
turning hand actions. If you lost your sight or hear-
caps.
ing, signal systems could be added to provide sup-
Right now, not many people, including legislators,
port. If it's an apartment house, its public spaces
agree that, first, there is a serious and large gap in the
would be fully accessible.
housing supply and, second, that to fill it is neither
The new Standards will address this concept. For
traumatic nor expensive. The primary thrust of the
instance, specifications will require that the entry
1974 Housing and Community Development Act is
level of the dwelling unit shall have a kitchen, full
to return authority and resources to responsible and
bathroom, living room, dining area, and at least one
accountable local officials. This can be good, because
bedroom or sleeping area. Provided at entries shall be
it gives us access to the housing decision-makers. On
a storage space that is large enough to store a wheel-
the other hand, as Mercer Jackson, of the staff of the
chair or walker. Kitchens shall be adaptable to pro-
Housing Sub-committee that wrote the Act, has said,
vide sufficient space for maneuvering wheelchairs,
"it carries no banners for the handicapped" and "pro-
storage units shall be within reach, and counter tops
visions for them are scattered throughout the Act like
and fixtures adjustable to comfortable working
afterthoughts." It continues the old and tired linkage
heights. If provided, cabinets and bases under mix
of elderly and handicapped from earlier legislation
center counters shall be removable. Door openers for
and, particularly, the most significant fact is that it re-
cabinets above counters shall be as close to the bot-
quires that we build exclusively for the elderly, for
tom of cabinet doors as possible.
the handicapped, or for both in a given project.
Other design features include:
Surely this last is the only acceptable solution for
Entrance: At least one primary entrance barrier-free,
the handicapped elderly. This approach to housing a
with access to an elevator. 32 inches clear door open-
special group was developed 20 or more years ago to
ing. Door sill flush with floor. If vestibule, 6 feet, 6
insure a housing stock designed and financed for ac-
inches between doors. Adequate night illumination.
ceptancy by a special group-in that case the elderly.
Stairs: No protruding nosings. 7 inches maximum
Therefore, at the outset of the national drive to pro-
riser height. Handrails circular or oval, 13/4 inches to
vide decent housing for people with handicaps, let us
2 inches thick.
not be persuaded that the precedent of housing for
Elevators: Install in all buildings of two or more
the elderly should be our model.
stories. Minimum cab size: 5 feet deep by 5 feet 6
inches wide. Doors to have safety edge with sensing
The new approach is to insure that the laws and
device. Control panel placed 4 feet from floor. Con-
financing devices for housing provide equal oppor-
trol buttons to have raised or notched information ad-
tunities for choices in housing for everyone, including
jacent to buttons.
those with handicap.
Corridors: 5 feet minimum.
Basically, this is a matter of design. The U.S. De-
Floors: Nonslip surface. Differences of level con-
partment of Housing and Urban Development
nected by ramps.
108
REHABILITATION LITERATURE
SPECIAL ARTICLE
These recommended standards are based upon the
movement to expand housing options for persons
research conducted under the HUD contract at Syra-
with handicaps. The research conducted at Syracuse
cuse University. Tasks were performed by approxi-
includes estimates of costs to make buildings acces-
mately 200 persons, including men and women in
sible as well as of costs of renovating existing ones. It
wheelchairs and on crutches, blind persons as well as
must be recognized, of course, that labor, materials,
hearing impaired. None of the recommended specifi-
and inflation costs will be unique variables with which
cations require a special design to accommodate only
to cope on an individual basis.
handicapped persons. This was also true in the origi-
Preliminary studies conducted under the Standards
nal standards and it has been well proven that space
Project conclude that any increased costs resulting
designed in this way is equally unusable by nondis-
from incorporating barrier-free design into new con-
abled persons.
struction are small when related to total project costs,
The availability of design standards based upon the
averaging .48 percent. Renovation of existing build-
concept of adaptability should herald the beginning of
ings to meet these design features average 4.02 per-
a new era, if community housing agencies, architects,
cent for all buildings.
designers, and builders are made aware of their exist-
In addition to design specifications and cost data,
ence. The stage is set by the NAHRO Project for
the HUD Project will also establish basic criteria for
community action to get housing going across the
the selection of products to be used in living quarters
country.
as well as public buildings. The new standards are ex-
When new housing is constructed and state or local
pected to be proposed for approval by the American
laws require that some percentage, say 5 percent, be
National Standards Institute in the spring of 1977.
designed for handicapped people, these designs will
Approval must be given, first by a review committee
be based on the adaptable principal. Whether or not a
made up of approximately 75 representatives of in-
percentage is mandated, we should now ask why it
terested national organizations and then by the Board
isn't 100 percent. Up until now only a handful of
of the Standard Institute. Following approval, the
housing options has been built for the handicapped.
next step is to work for standardization of building
Why not therefore reduce the balance until at least
codes and design criteria based upon the official
10 percent of the entire housing supply becomes
ANSI Standards.
available for their use? It is justified by two things:
The HEW-sponsored Project conducted by the
The first is that, at the present rate of housing con-
National Association of Housing and Redevelopment
struction, it will take 10 years to reach the 10 percent
Officials and the HUD-sponsored project conducted
need point if all housing is made for adaptability over
by Syracuse University reflect some new approaches
that period. Second, there are builders and designers
for attacking the housing needs of handicapped per-
who will agree that making all units adaptable will
sons. Most important, these projects will put practical
cost less and present fewer levels of occupancy prob-
resources into the hands of persons responsible for
lems in the long run than if only a few special ones
moving laws into action at the community level. This
are built.
bodes well for ultimately providing a wide range of
The availability of cost data, also an aspect of the
housing options for everybody, including persons
new Standards Project, is another advancement in the
with handicaps.
Reprinted from REHABILITATION LITERATURE, April, 1977, Vol. 38, No. 4, pages
106-109. Published by the National Easter Seal Society for Crippled Children
and Adults, 2023 W. Ogden Avenue, Chicago, Illinois 60612. Reprint no. A-200-21
Presentation on:
The Principles of Service Delivery
Mallep on the general theme:
Barriers to
Physically Disabled
Sobruary 6.7, and 8. 1977
My Lanses
Irn Plaza
Author:
Ms Jane J Strul
Director : : Psychologics"
Onta. is Crippied Children the
360 Rundey Road
Tororto, interio. Canada
No nation in the world, has proclaimed the concept of the
equality of all human beings in such & way or to such an extent, than
has my friendly neighbour, the United States of America. Declaring
over 200 year ago that "all men are created equal", the value of equality
of human beings became the very essence of the fabric of American society.
As a Canadian, who was fortunate to do graduate study at an
American University, I was taught the valuable lesson of the importance
of history. Through the history of Black Americans, we have much to
learn and much to apply in our deliberations today and tomorrow.
In the beginning, as slaves, Black Americans were unequal to
White Americans and were separated out from white living quarters. Thus
the words unequal and separate would characterize the first phase OF
the history of Black Americans.
By 1865, almost 100 years after the Declaration of Independence,
and with their freedom being declared, Black Americans became equal in
the eyes of the law; but they remained socially unequal and separate.
In the next century, and principally after World War II, Black
Americans rejected their equal but separate legal status, and they re-
jected their unequal and separate social status. Their Civil Rights
Movement has achieved equality and integration for the most part in law,
but there remains resistance to full social integration and equality in
many of our communities today.
Thus, we learn that the process of achieving social equality
and integration for Black Americans, while not yet schieved, is:
first, unequal and separate, second. equal and separate, and
finally, equal and integrated, with the sucial rchievement always
following the laws of the land.
The population of people with physical disabilities is, like
the Black American population, & heterogeneous minority group. In my
view, people with physical disabilities, are in the first phase of
their history towards achieving their civil rights. They are, for the
most part, socially unequal and separate.
Let us learn from the 200 year history of the struggle of
Black Americans to achieve equality and integration.
Let us resolve to eliminate the intermediate steps.
Let us strive now and achieve immediately the opportunities for
full equality and social integration of people with physical disabilities.
One of the major barriers to integrating persons with physical
disabilities into our communities is their dependence upon others for
physical help in some of their daily living activities. A second burrier
to community integration is that this needed physical assistance is most
frequently and typically found in nursing homes; chronic care hospitals,
homes for the aged, or other institutions separated but from the main-
stream of community life. Thus, many "graduates" of rehabilitation
programs may quickly begin lives of isolation and dependency even though
individuals may possess good educational and vocational potential and
have been equipped with skills and devices for self help. If the re-
habilitation goal of active, productive living is to be achieved, and if
we are to achieve an equal Quality of life for disabled people, then we
must ensure their integration into the community through the availability
of a range of accessible living accomodation, together with a broad
range of supportive services such as attendant care and transportation,
key elements in successful integration.
With social equality and integration as our immediate targets,
I now want to present two basic principles to act as the basis for all
our deliberations, including the aspect of support services related to
shelter or housing.
The first of these is fairness or justice. What is a fair
approach to support services? I submit to you that physically disabled
people in need of physical support services want to and should pay for
the ordinary costs of living. This is fair and just. I further submit
that physically disabled people should not have to pay for any extra-
ordinary costs of living occasioned by an inability to perform physical
functions for themselves. To be burdened with extraordinary costs of
living associated with physical disabilities would be unfair and unjust.
As an illustration of what is ordinary and what is extraordinary, let us
for a moment look at the "Case Study of Haid1" which is available to
you. Heidi, now 28 years of age, has been a quadriplegic since she broke
her neck in a diving accident 5 years ago. Dependent on her motorized
wheelchair for mobility, she is nevertheless employed in a hospital
earning $19,500.00 per year. Her major extraordinary costs of living
are (See Appendix B)
1) Van transportation to and from work
$
$2,640.00
2) Transportation for recreation
-
324.00
3) Housekeeping and Meal Preparation
- 4,080.00
4) Physical Care Services
1,200.00
The total of Heldi's extraordinary costs of living were $8,603.51, all of
which was also taxable as earnings.
Her ordinary or usual costs of living, contained in Appendix C
HERE calculated at $5,668.15 per year. You will note from Appendix F
lable 1, that Heidi had to earn $19,000 per year just to break even; she
could not save any money; and she could take only one vacation per year,
and that was restricted to the city in which she lived. Based on today's
costs, Heidi would have to earn over $22,000.00 per year in Metropolitan
Toronto, a municipality of over 2 1/8 million people, just to survive.
A second feature under the principle of Justice, is that dis-
abled people must have significant involvement in the planning and
management of any enterprise concerning them. Planning with disabled
people is fair, where with is the operational word. Aside from what is
fair, planning for someone else is foolish and usually results in under
or non-utilization as well as unhappiness and the misuse of finances.
The third basic principle for our deliberations and planning
is freedom - freedom to interact on en equal basis with one's fellow
human beings, freedom to choose where to live and in what kind of
accommodation on the same basis as any other citizen; freedom to take
risks that involve one oneself; freedom to make one's own decisions;
freedom to be responsible and accountable for one's actions and behaviour;
freedom: to enjoy privacy and with the assurance that others will not
betray matters of confidentiality, freedom from control by others, and
freedom to assert and do for oneself as much as possible. I might better
have said the principle of freedom within limits since each one of us
has limits imposed on us in any culture for the protection and well
being of all peoples as well as individuals. But, let the limits
imposed be applied with equality and fairness for all.
With DI.F targets of soc al equal
social integration firmly in view, and with our basic painte pleas of
justice and freedom as our means of achieving our objectives, weat is
Dur task ahead?
Obviously we must decide what we clean by supp. services
related to housing. We should attempt to deliniate ben CENT
support services and other kinds such as recreation and
We should deal effectively with what are assential and
essential support services, recognizing that non-essement support
services might occasionally become essential because of
circumstances. e.g. escort service for emergency Banking,
look at the needs of staff for privacy, for duties and
Me should take a fresh view of the training Treads of
hide bound with the traditional visa of nursing on
obvious Backgrounds of choice. But stove al all,
the needs of the populations we are talking about
first step.
ECONOMICS OF SUPPORT SERVICES
- One experience as a Demonstration Project for the Ontario Government.
The Clarendon Foundation (Cheshire Homes) Ind. at 21a Vaughan
Road, Teronto, Ontario, Canada, has been operating a Demonstration Project
for 1½ years (see attached sheet) to prove that:
(1) Many severely disabled people in need of physical support services
associated with accessible accommodation of their choice, can live
with a better quality of life and in good health, outside of
institutional settings such as chronic care hospitals.
(2) The delivery of essential and other physical support services on &
24 hour basis permits
(a) choice of accommodation
(b) integration within community life
(c) gainful employment, training, and education
(d) the Province of Ontario to assess the actual cests of these
services separate from the ordinary costs of Bringisuch
as tenants. food, shelter, and clothing which are paid for by the
Our experience to date with maximum occupancy reveals that our average
per diem cost for all support services is $19.52 per tenant based on
13 tenants. Comparing this to chronic care and extended care hospital
costs, we learn that:
(a) our costs (including food, shelter and clothing) are less
than 50% of these institutions whose average per clem cost
is about $55.00 per occupant;
(b) the number of hours of care given to our tenants
at
least 15% more on an average than that given in such
hospitals; and
(c) our tenants are all enjoying productive lives ocavionally
of their choice.
socially, and recreationally in ordinary apartment living
Our next step, the extension of support services on & wider basis, has
already begun with no increase in costs.
INFORMATION RE CLARENDON
Question - What is the Clarendon Foundation and who do they serve?
Answer - Clarendon Foundation (Cheshire Homes) Inc. is a non-profit
Corporation which was established in 1974 for the purpose of providing
accommodation and support services to severely handicapped adults who
are either employed or in training to become employed.
The Foundation is currently operating a pilot project in
cooperation with the Ontario Housing Corporation and the Ministry of
Community and Social Services at 21a Vaughan Road in downtown Cronto
for a maximum of 13 tenants who are housed in 5 apartments plus communal
dining and laundry facilities.
All tenants require at Teast LNO of the support se cas
offered which are personal care, meal preparation and serving laundry
and housekeeping (light and heavy) in order to function day day
as a student or employee in their chosen field.
Support services are carried out by 2 staff of 6 fu -time
attendants, 1 housekeeper, 1 part-time cleaner and ? part-tin Co-ordinator.
Services are available on a 24 hour a day basis and are givenion the basis
of physical inability to perform 8 function for oneself Eaci tenant
signs a Service Contract with the Foundation outlining the cold
the services. There are no fees charged to the tenant for thise services;
however, tenants are required to pay all normal costs of living such as
food, cleaning supplies, etc. The costs for these services are paid for
by the Ontario Government.
Through agreement with the Ontario Housing Corporation rent
is geared to income and cannot exceed the market value of the pace
occupied by any tenant. Each tenant has a one year sub- lease with the
Foundation under the same general rules and regulations which are in
effect in most apartment buildings in Toronto.
interestion in 1:19 proful
on
Danger # maintain confident 1227.
ACCIDE
AND
OVERSE C1 Chicago 2200
Heldi, SEOU 28 years of age, has been in quadriplagic sends the broke her,
neck in 2: diving accident S years age. She is permanently confired at
wheelchair which is motorized (Eost - $1,500.00) as she CARROT tish hereads
IN a regular wheelchair. This docir 10 usually rul able that every conths
= problem with the motor or electric wires develops which requires LIVE
of EN electrician ($15.00), of & van to take the dealer :0
and from the repair shop ($12, (10) BILL extra house of duty Irm. has MEDICANE
who MUST that accompany her et aughout the day : provide ler er force
mobility ($15.00). Two 12-voi outsendes provide the for CSH wase's
chair. Fornunately, chewe 15.3% aparkly relisol too in 2 DO 3 you partir ...
when they need replacing, this represence LD. unexpected BECAUSE $35.30
Heidi has 2. university degree and 18 Employed in 3 hospited (019,,00.00
PET year salary). She chose LO accopt the hospital job at :: was 1:
her apartment and to the Van Transper tation services she quirts =132 168
her wheelchair. The shorter distance between work and her pinn. C.
was 2 definite factor in reducing the already highly the
Van Transportation costs ($2,640.00)
Heidi WRS cbliged to rent in 2. modern apartmone Unit
required 3 recidence without stairs and steps RT with your
the requires a love-in househloger 220.00) :-
accivities such as nousekeup conts 33.
quites & URA bedreon unit 50 affort WET
IMea NO that one speciment
difection reach 2.3 having the do
50 she could get over the door stall CBS the 1
housekleber 1.3 paid 20 help h 12: 2: up and CEO $ 200 in II.
LD bad 21 night. She does househeeping and shipping ETTS
providing breakfast and cooking SUPPLIER the has ESG 16:
and 4:00 p.m. to herself as Heid: BRUE lunch 1.
On the weukends, the housekesper to off and 3. st
($40.00 a weekend)
Live-in Housekoeper's Salaties (for mid
3200 00 and $250.00 par month Alus TOOR and boa
of Canada Kanpower Dec. 9. 1974 ("elephone)
been calculated 200 $85.00 por month. 48101 pay
her live.in househeeper for essing will barns
00 avoid the daily of 37.00 change by the is
Firsts en scale fo. ENC. your
** Using Itntal figuies of $ 37.20 month to: 11.0
opposed 10 $200.00 a month Tents R CLE
Page 3
Specializan nursing care is required from a registered DATEE twice :
resk, As this visiting service only operates during regular working cours,
Neidi must make up the two hours of working time she loses on Wednesday
surnings in order to get this care.
Buying clothes ($500.00) represents a major expense as nearly all
of the clethes must go to is dressmaker for alterations for easter getting
on and off ($100.00). Hairdressing is a necessity for Haidi as she cannot
lean forward over a bathroom sink and only the hairdresser staks are ii 2
the right height to provide the backward reclining position which can
accompridate her neck ($260.00).
Generally speaking, Heidi has few problems with illness. To maintain
her good health however, she must take the drug "Furidantin" daily the
year round ($240.00). In addition, to reduce the spasm in her arms and
legs, she must take "Valium" daily ($38.00). Drug bills are therefore
high although she is covered by an Extended Health Care Plan which covers
the cost each year after $50.00 deductible. Equipment costs, in addition
to her motorized wheelchair, represent an exmense as she requires a menual
lightweight adult wheelchair with removable arms ($362.00), as Hoyer lift
($392.00) and a bathtub clamp ($179.00) in order to utilize the lift dafely
for transfers between wheelchair and bathtub.
stat is covered by regular medical insurance ($51.13 a year) so CONTA
attention is not 21 problem, although the 10% she must Day 62 the
Sill 1: righer than the nome is she cannot get to the Tocal physical
upstairs office and house calls must be made rather than office visits.
Regular visits to a dentist ($25,00) are not within her Budden
has to travel downtown in the whealchair Van ($12.00) in order to visit
a dentist in & modern office building which has no stairs 07 other arce-
itectural barriers.
Heidi's grocery costs are not more excessive than anyone else who ASI
in provide for two people ($1,920.00). However, she seldem can a ord ::
intertain people for supper or a party ($50.00). Neither can she servit
nerself the luxury of going to : movie or play, or even going to another
person's house due to the transportation charge ($12.00), plus the cost D :
the entertainment itself ($5.00). Household sundries, unusual expenses
subscriptions, etc. also add to her already excessive expenses sed, 09
course, 162 have not even considered the initial cost outlay for fundshings
($2,000.00)
Although Hetdi is permitted a $1,700.00 basic personal exempt on and is
$1,006.00 disability deduction (1974), her income tax still MIS è
major ($19,500.00). loss of income (54,905.00) due to Heidi $ relatively high annual schiry
Considering all the expenses outlined above, daily 25 well as unexpected
costs, it is nuite probable that Heidi will have no margin of financial
security at the end of a year.
Meidi, as a well educated, well motivated, ambitious woman, is much
sendred within her community for her courage, determination and pleasant
sitttudes in the face of such a permanent disability. What her neighbours
should be admiring (but don't because they have no knowledge of it) is her
courage in maintaining such 202 slender insecure hold on an overwhelmingly,
costly, complex arrangement for independent living. Heidi must live with
the ever lurking knowledge that it is only a slender thread of liappenstance
which keeps her from the one a Iternate life-style available to such as
she - i.e., confinement to an institution where she would be subjected
to institutional rules and regulations, loss of privacy and freedom, :055
of employment and salary, and demoralizing dependence on the limited annual
income ($876.00)* which disabled people are allowed to keep from provincial
assistance in such circumstances. Instead of supporting herself and others
through tax payments ($5,127.20), Heidi's care would be costing others not
less than $6,351.00 per year**
Heidi is, in fact, one of the few fortunate persons who have been able
to mesh all her problems into a workable solution i.e. accommodition, COPE
services, transportation, employment, etc.. If one part of this puzzle does
not fit - she is then likely to require the services of a nursing name or
extended care facility and her job is no longer possible,
=
The allowable costs set by the Province of Ontario are $11.00 per day
($4,015.00 per annum) for is residential care person and $15.00 per day
($5,475.00 per annum) for an extended care person in a 61 bed residence in
Toronto providing some supportive care. (These allowable costs prevail in
approved Nursing Homes as well.) ) Each single, disabled resident may receive
family benefits assistance from the Province of either $225.00 (ambulatory
allowance) or $238.77 (wheelchair user allowance) per month. Of these
amounts, each resident contributes $5.75 per day for care, room and board
and is thus allowed to keep $53.00 a month for his/her comfort. The meel-
chair user is allowed to keep an additional $20.00 a month for transportation
costs ($12.00 a return trip by van transportation). Thus, the total cost to
the Province for some supportive assistance is between $4,651.00 and $6.35) 00
per year per resident. Heid:'s cost to the Province for there would -be
$6,351.00 per annum in this residence or in a nursing home. Jr Heldi had DO
stay in on extended care facility, the Province would pay an average of 537.90
per day, or $13,855.40 per year.
"Ontario Hospital Compilation", published by the Ontario Hospital Associación
and reporting for the period January to June, 1974, revealed that the median
per diem cost for pat ent care was $37.96 for the 16 participation hospitals
providing extended care facilities (the range was from $56.82 to $29.77
The reporting hospitals were classified as public, chronic, extended Co:e,
convelescent and rehabilitation.
OPENDLY R R.
COSTS
07
PLASON
RECAUSE
(a) TRANSPORTATION - @ $12.00 per day return
(i) To and irom Work @ 220 days
$2,040.00
324.00
(ii) Social, Cultural, Religious, Recreational
(baced on 1 outing every 2 weeks within Tozonto and 1 vacation
each year in Teronto)
*
On December 9. 1974, the nost was 912.00 per return trip with the cost assured
of rising to $14.00 by the end of the senth. The Toronto Transit Commission's
Filot Project for 46 working handicapped in subsduled to begin Fabruary 5. 1975.
$4,080.00
(h) HOUSENEEPTING AND MEAL PREPARATION
(d)
Live-in Housekeeper at $225.00 pex security
$7,700.00
(11) Board for Housekceper @ $85.00 per means
1,020.00
(Mil) Difference in Cost between 2 bedroom
1 bedween spartment @ $30.00 DGE cooth
360.00
Live-in Bouseheeper Salary (for cooking and cleaning) Tanges between
$200.00 and $250.00 per month, plus YOUR and heard (Source of
Information: Miss Jossen. Canada Manpower, Telephone: 363-5931, Ext. 317,
December ?. 1976).
200.00
(c) PHYSICAL CARE SERVICES
(i.e., dressing, bothing @$9.00 & visit noteo a dog based on fees of Victorian
Order of -Nurves, or $6,70.00 per year #lternative of persoading Housekceper
for another S100 per month.
$
(i)
PAYMANCE
PLAN
@
$12.77
(Based on Onessive Hospital
SEVERED UNDER THE EXTENDED HEALTH
(a)
CARE PLAN
6.126, IFY
apartment, vental and hydro at $200.00
2,400.00
found
50.6 $20.00 per week and $20.00 per week during 3 week
chard wachton)
1,370.00
Annual vacation and autordainment during year
300.00
(c)
Troup Insurance EC $2.00 per week
204.00
who have at $8.56 per month (party Line) - varies depending
- . . . . The cad for a push button phone with tpeaker applifier
(s.
Furtage for unforesean and Everyency Expenses (#t 5% of
samel salery)
500.00
Universityment Insurance of $8,320.00 insurable income)
53.00
list aded Birlth Care Insurance for Company Groups a: $0.86
J.B.
personath (hased on Onterio Blue Cross Plan)
(
taxis Hospital Insurance Plan at $4.20 you 1001.00 (plue
25 LET with Lot Dovamage)
0.1 05.05.202 vot.
(:)
Indiduntal Expenses
(Magnoines, writing supplies, soap, torthpasus, Morary
memocrship, etc.)
100.00
32.033
COMPANATIVE COSTS OF 1-5 STUTIONS Pi YEAR PER PATIENT
ING MOMES
AMBULATORY PERSON
WHEELCHAIR USER
Room, Board and Care
$4,927.501
$4,927.501
GAINS INCOME COST TO
PROVINCE
$ 696.00²
$ 876.002
Total Public Assistance
$5,623.50
$5,803.50
1. These figures are based on is maximum allowed per diem cost per patient
of $13.50. There is no per diem ceiling under the Homes for Retarded
Persons Act as opposed to the Homes for the Aged, The Charitable
Institutions, or the Children's Institutions Acts.
2. Effective May 1. 1975, single recipients of GAINS will be paid $2,887.92
per year instead of $2,766.00 annually. The increase actually is paid
to a Nursing Home leaving $696.00 per year for an ambulatory resident
and $876.00 per year for a wheelchair user for "comfort" and "trans-
poration". (Under the Guaranteed Annual Income System, a single
recipient in a nursing home is allowed to keep $43.00 per month for
comfort and & sonthly transportation allowance of $15.00 per month or
$30.00 per month).
ENTENDED CARN HOSPITALS
LOWEST
MEDIAN
HIGHES?
Room, Board and
Care
$10,866.05
$13,855.40
$20,739.30
3. Cost figures obtained from the Ontario Hospital Associations'
"Ontario Hospital Compilations" publication reporting for the
period January to June 1914.
1)
1. DEDUCTIONS
: $31.20
(..)
Contas Present Plan
$ 331.71
(a)
Persons Fried Crewink Unit
$ 700.00
C.
: $1.00
:. DESCRIBED
32,712.00
H
[anic Patienal
111. Disability Deduction
(condinal foll-tine 10 :
J XIGHARDY
COMPARATIVE INCOMES FOR HELP LIVING INDEPENDENTLY
TABLE 1
1. Gross Income
$10,000.00
$14,000.00
$17,000.00
$19,000.00
$19,500.00
2. Extraordinary Costs of Living
8,603.51
8,603.51
8,603.51
8,603.51
8,603.51
3. Effective Gross Income
1,396.49
5,396.49
8,396.49
10,396.49
10,896.49
4. Taxable Income
6,266.80
10,266.80
13,266.80
15,266.80
15,766.80
5. Total Income Tax Payable (1974 Rates)
1,485.60
2,757.60
3,889.20
4,685.70
A.905.00
5. Effective Net Income (after taxes)
- 69.11
2,638.89
4,507.29
5,991.49
7. Ordinary Costs of Living
5,668.10
5,668.16
5,668.16
5,868.26
5,668.16
S. Surplus or Debt
-5,737.22
-3,029.27
-1,160.87
42.63
323.33
Some Guiding Principles for the Manager of Housin for Handicapped Persons
1. Horo, canagement doss not know all the answers, most especially the design problems
of elevators, entries, parking, and service processes, such as recreation and shopping.
2. Handicapped persons are whole persons who happen to be functioning under unusual
circumstances, and therefore have special physical and emotional needs.
3. Functional capacity, not medical diagnosis, is he manager's key to analyzing
adaptation of each person to the housing unit.
4. Therefore, adaptation to the unit must be individual, without presenception,
and valid suggestions for that adaptation can come from any source,
5. Persons with one kind of handicap can often assist others with It different kino,
6. Handicapped persons often have special food proparation, bathing, therapy and
exercise needs.
7. Housing is & key part, but only & part of 3 complex of movement and activity by
handicapped persons.
8. Employment Eay be & critical element in continued residency for some, but this
may require income waivers.
9. Handicapped persons need all the standard building and community services of
subsidized and assisted housing, plus others deriving from individual handicaps.
10. Housing for handicapped persons should be viewed as an interesdiate step toward
the true goal of full integration of the handicapped into all housing and the community
at large. Such housing, therefore, any be seen 23 2. testing ground for integrated,
accessible and usable housing everywhere, and information learned wust be promptly
communicated to planning and building, architesture and Industrial design, governal
and social research.
Korton Louds- Feb. 3977
Attitudinal Barriers in
Bavir mental Design for the Disabled
"Normal people, attempting to emphatise with disabled people,
make assumptions about how people with disabilities behave
or ought to behave, which do not at all correspond with how
they actually do behave. These assumptions are probably at
least as prevalent among architects as they are anywhere else.
Selwyn Goldsmith: Designing for the Disabled
For the past eight years I have observed the environment, both animate
and inanimate, from & lower vantage point in the wheelchair. I have
observed it both as a human being, and as a design professional.
I come to my work as an environmental designer for the disabled because
I am trained as an architect and am myself & paraplegic. I am therefore
daily sensitive to and conscious of how the environment presents itself
to me, and how people react towards my existance in it.
My professional specialization has been in the field of housing, be.
cause 1 am drawn to this human shelter which forms a beafefoundations
to which each individual relates, physically and psychologically, and
which contributes such an important core to the sense of human belon-
ging and worth. Y have therefore turned to the problem of housing for
the disabled, and I have done so with strong feelings about what dis-
abled people truly desire. The goals of the disabled are encompased
in the principles of "normalization" and involve the will to freedom,
equality, social integration and choice.
Integrated
My major experience in the implamentation of normalization is through
a deconstration project of integrated housing for severely physically
disabled persons. My associates and I. have been engaged in developing
and coordinating resources which would allow quadriplegics to live in-
dependently In the community, in individual subsidized apartment units
in standard housing projects, with at-home support services when required.
2
Because our concept was, and still is, somewhat avant-garde in the
Canadian context, we have had to cross many attitudinal barriers in
discussing the functional feasibility, psychological desirability
and economic validity of such a proposal. First we had to convince
the many bureaucrats, planners and designers that even severely phy-
sically disabled persons did not wish to or need to live in "special"
environments particularly conceived for them, and that they were pre-
pared to accept certain inconveniences, risks and uncertainties in
order to enjoy a relatively "normal" life-style, according to their
choice.
Not only did we encounter great skepticism and fear on the parts of
administrators and programmers, who tend to be over-cautious and over-
protective, but we also encountered strong resistance from architects
and designers. These people, from what little they knew of the topic,
vere reluctant to accept the integrated concept, fearing that the TE-
quirements for accommodating the physically disabled would involve
undesirably specialized demands and result in excessive costs.
The truth of the fact is that the objectives of "normalization" are
quite the opposite. We have tried to domonstrate, and have had success
in this, that physically disabled persons can live in independant
housing units which are barrier-free, require at minimum of design
modifications, and involve negligesble additional expense. Instead of
relying on special built-in features, we emphasize the rolas of OC.
cupational therapists and industrial designers to teach specific
types of manouvers and/davelop simple adaptations and squipment which
will increase individual functioning.
This type of housing has the advantage that: 1) it can be provided
anywhere; 2) it is well within the design scope of any architact;
3) it can accommodate the able-bodied with equal ease; 4. it in no
way stignatizes the unit or its occupant; and 53 it emables the dis-
abled LEDENE to learn to ada L to almost "normal" accommidations, So
3
that they develop coping mechanisms that enable them to function, as
independantly as possible, in other barrier-free situations.
These are all essential aspects of the normalizing process. So far
we have found few short-condings in this type of approach, and we
have noted an improved self-image of the residents because they are
pleased that they are coping and living in a standard fashion.
Their personal environment and independant life-style, whatever its
accompanying problems and responsibilities, is building initiative
to try more and to do better. The residents themselves are amazed
st their growing strengths and abilities to manage physically, emo-
tionally and financially. All are proud of their progress and achie-
vements, and have a high self-esteem.
We too are proud and happy with this demonstration, because it provi-
des us with experimental ground on which to study various aspects of
nurmalization. In our experience to-date, we have encountered quite
a discrepancy between what the able bodied population, even that part
working on behalf of the disabled, see as the optimam solution for
the disabled, and what the disabled really aspire to for themselves.
Normalization seems to have different parameters for the two groups,
and it will be our goal for the future to reconcile them and find a
happy medium.
Parameters of "normalization"
Many of the attitudinal barriers which we encounter smong architects
designers 3TR based on pre-conceptions and lack of understanding
about what disabled people cruly wast need, The most damaging and
wide-spread in that disablec people save to, or prefer to, function,
live 9 work, recreats, etc. in special environments that are specifi-
cally designed to accommodate the handicapped, and that consequently
are segregated, different, and spart from normal people and normal
environments.
This is a great myth! Disabled people cre not a breed apart!
They are persons like everyone else, albeit with some physical
limitations, but these can be accommodated in an uncomplicated
fashion by the elimination of choughtlessly-built barriers, by
promotion of good industrial design, and by developments of simple
adaptive apparatus for severe situations.
Uncertain of what a wheelchair really implies in terms of functi-
oning, or what other physical limitations mean in terms of individual
menouverability, designers tend to over-compensate in various exag-
gerated and unnecessary ways. Often they over-design in terms of
size and provide unreasonably large spaces or complex features
where standard dimensions and equipment, properly applied, would
have sufficed and been more desirable. Or designers become so
engrossed with ergonomic elements of the physical aids and minouvers,
that they design over-specialistd facilities that are oriented more
to accorrodating the physical limitations than to catering to the
human baing behind those limitations. Often, too, in order to in-
create some aspect of safety on menouverability, availuents incor-
porate more berriers and problems than they actually eliminate. Or
they are so unsensitive to the disabled as living, feeling people,
that in an effort to eliminate any mistakes they create anonymous,
undefined and starile spaces which alienate and diminish human beings.
Double-ended adantation
The total life experience, for everyone, is the continual adaptation
to and inducaction between EED and environment. Unrealistic perfor-
marice standards and exaggerated design solutions develop attitudes
which reinforce hurriers against the acceptance and intogration of
the disabled minerity in the social milieu. Disabled persons are ge-
nerally prepared to compremise and to adept to environments that are
basically accessible and have DO gross functionality obstacles. The
direction toward batrier-free environments: is the reasonable spprosch
towards achieving such ends.
5
In order to make room for the physically disabled and to accommodate
them comfortably side-by-side with the able bodied, society has to
make primary and major modifications in its attitudes and values,
along with secondary and minor modifications in the built environ-
ment. It has to provide a greater opportunity to the disabled mino-
rity to adapt and to give shape to the normal environment, $0 as to
eliminate 2 divided society where individuals are expected to function
only in spaces and in a manner assigned to them. Maybe the reluctance
to embrace barrier-free design stems from the fact that somewhere in
the back of their conscious, the able-bodied are willing to let the
disabled advance only so far, and no further.
Now is the time for myths about the disabled to be replaced by truth
and reality. A personal physical limitation does require adaptive
aids and occasional simple help to achieve effective functioning.
However, over-compensation and excessive design criteria produce
on atmosphere that is uncomfortable for everyone concerned. It
builds barriers that interfere with the acceptance of thedisabled as
valid and useful citizens, and it further restricts the personal ex-
pression, human potential and self-actualization of individuals who
are thus doubly deprived.
Patricia Falta, B. Arch., M. Arch.
Montreal, Quebec, Canada
January 28, 1977
PROLOGUE
"Some men see things as they are and ask why;
I dream of things as they could be
and ask why not."
- Robert F. Kennedy
WHY not? Why not integrated living?
What is INTEGRATED LIVING?
Simple. It is living in environments that are not segregated,
separate, apart, restricted, different.
For whom? For everybody. For you, me, young, old, black,
white, rich, poor, able-bodied, DISABLED.
Where?? EVERYWHERE. There where all the others live, in the
housing they enjoy, in the neighbcurhoods they create.
Whereever one BELONGS:
Why??? Because this 10 an age of expanding wareness. Integration
for all. Equality. First-class citizenship. LIBERATION.
What is BO difficult about accepting the physically disabled
in our midst? Seeing their as human beings like others, with
similar aspirations, needs and ambitions, but with physical
mancuverability problems and limitations?
Other people have limitations, Albeit less obvious ones.
Sometimes much more debilitating ones.
Can we not stress the many similarities rather than the few
differences? Can we not accomodate those extra physical
needs in as natural a manner as possible? Do we have to
focus on 8 whirelMair or other physical aid as the primary
defining characterist of that being?
"Make no assimptions!"
a Sondra Diamond, psychologist
Let ME be IDE. & person who 1.8 part of a family,
wants to love, to help, to share, to contribute.
Inside of my body, I the same buman being as you.
Let me AMONG you. To work by your side, laugh and cry
with you, stumble and succeed as you. do, to face the
challenges of living.
Living beside YOU.
In your communities, your buildings, your homes.
Why NOT?
Why not change your attitudes to focus on the ABILITIES,
not the dis-ability.
"Don't do me no fevours...
Don't t make my decisions for me, deprive the of my
responsibilities, over-protect Me, pationize me.
Don't imprison the real we in your fearful perception of me.
Give me FREEDOMS such 82 you enjoy, and struggle with.
Psychological freedom - to develop end express myself,
to be stimulated, to be motivated.
Social freedom - to be exposed to people and to activity,
to choose my style, my way,
Economic freedom - to be given opportunities, to work as
you do, to be productive in- my way.
Do you realize that I value INTERENDANCE as much as you do?
"You are a child of the universe,
no less that the two and the stars
You have a right to be here. "
Mar Elemann
ALTERNATE HOUSING
"Alternate" housing for physically disabled persons implies non-insi-
tutional housing; housing that is "normalized", that is integrated
both physically and socially into the regular housing-provision
systems and structures, and which encourages its residents to inver-
act with equal efforts and freedoms within the community. In Er:
case of severely physically disabled persons, such housing must pro-
vide accessibility, functionality and economic feasibility. When
necessary, it must also be supplemented by adequate, permanent per-
sonal help and by special-use equipment and technical aids where
possible. Alternate housing includes living in private homes, in
apartments, and in commines or cooperatives.
The Quebec experience with alternate housing is in the field of
spartment living. For more than two years Projet Normalide Lon has
been functioning in Montreal, working to promote the condept of
integrated housing and to implement the provisions of the disponents
required for independant spartment living for young severel, physically
disabled adults. To achieve these ends, Projet Normalisation has
used the vehicle of a three-year demonstration project which has the
support of the federal and provincial social welfare authorities.
The efforts of the demonstration project are mainly comdinative.
To the various agencies which are responsible for providing the
housing and the service component in the province, the project pre-
sents them with the immediate need of the disabled, and advocates
that they expand the resources within the various existing resource
delivery systems to include also the needs of physically handicapped
persons. Projet Normalisation further helps the authorities to de.
fine these needs and provide the appropriate resource allocation.
2
Such an approach has proven successful in opening doors for negoti-
ations for two reasons. First, because as a pilot demonstration pro-
ject it does not directly threaten to disrupt the existing delivery
systems, and does not demand a total initial commitment-to-the-cause
on the part of those who are willing to cooperate with US. It offers
$ trial and error method, open to changes and modifications along the
way, and can even encompass failure and rejection.
Second, the project gains a certain status because it is couched in
the methods of a pseudo-scientife research program: it is thoroughly
documented along each step of the way, closely monitored by the fede-
ral and provincial governments, and professionally evaluated as to
efforts, efficiencies and effects.
Since It is 8 demonstration project, the principles and practicali-
ties of integration in terms of independant apartment living can be
gradually and comprehensively explored as a pilot experience. The
many individuals and agencies involved are continually assessing feed-
back, both as to method and result, and there is constant review and
evaluation of what has been accomplished before a further step is
proposed.
The project has now been more than two years in progress, and has
given concrete results which provide positive feedback and form real
precedents on which to develop future work. As a sequence to the ini-
tial stage, the majority of the agencies with which we have collabora-
ted no longer regard the project as a "demonatration", They have
convinced themselves that the objectives which we had set forth are
feasible and desirable, and they have adopted policies and budgets
to include the requirements of integrated housing within their man-
dates. Thus the pilot project has offered an acceptable means to ex...
periment withhew approaches, and editing systems are now being perma-
nently adapted to include the needs of physically disabled persons.
3
One of the objectives of Projet Normalisation specifically stipulated
that young quadraplegic adults should be integrated in independant
apartments, and many of them are presently living on their own. Their
apartments are mainly located in social housing projects which are
rented at a rent geared to income scale. The initial furnishings
for the residents have been paid by the Social Affairs Department,
and the personal services, as individually necessitated, are provided
on 2. home-visit basis and fully subsidized by Social Affairs. Each
of the individuals are happy and proud to be on their own, "chez my"
as they say. They ask for various amounts of personal services, from
none at all to a fair amount, but in addition to this type of formal"
help, they depend on other social contacts which they have made and
which give them a great sense of personhood - and we BYG happy for it!
The majority of the units that have so Ear been handicap -modified
are located in Senior Citizens' housing. We had feered that Teaching
young disabled adults into such on environment would be only partint-
iy integrative, and therefore only semi-normulizing, but the expert-
ence to date seems to erase that fear. The unjority of the disabled
inhabitants have arranged active lives of their own, and therefore
are not deeply conscious of their surrounding neighbours. Thus they
are very little affected by the fact the senior citizen residents
have different socio-psychological attitudes and needs than their
own. The young residents sre mainly satisifed with the buildings
and apartments as such, and their sense of having $ normal life-style
is not at all diminished.
The modified units and in highwrise brildings of six to mine loors
each, one modified apartment per floor. This arrangement WOLLS well,
both in terms of design layour as wall as of dispersal of the disabled
throughout the building. the problem of fire sefery has been brought
up often: The operative response is that the birlding administrators
and the disabled tenants work in close cooperation with the Elits 111.
4
partments, which all keep on file in what buildings and on what floors
disabled persons live, whether they are elderly or young adu t tenants.
In addition, special fire department "invalid" decals are placed in
the window of each handicap unit for easy identification, so that in
case of fire emergency the firemen would rescue the tenants there
first.
The local municipal housing planners, architects and adminis trators
are not unduly worried about fire safety, because they feel issured
that their buildings are increasingly more fire-proof, for batter
safety of all tenants. In case of emergency, they prefer that all
tenants use the balconies as escape Locations to get out of alle smoke.
In the handicsp units, the balconies are made wheelchair-accessible,
and smoke detectors are installed in all apartments.
As regards other modifications in the handicap-sdapted units, We have
asked for only slight changes and additions, for EWO reasons.
First, It is easier to convince the architects and administrator: that
if only minor changes are necessary, this implies little idditional
work and minimal extra cast. It is easier for the authorities to ac-
cept our basic request and it alleviates their fears that they will
commit themselves to creating "special facilities" and undesirably
different apartments which would be inconvenient for the able-bodied,
if such were the need. Basically, therefore, the request in only for
simple removal of accessibility and functionality barriers. These
constitute minimal design criteria which are well within the scope
of every erchitect and which contribute a negligeable cost increment.
Second, WE try to encourage the disabled tenants to adapt to en al-
most "normal" apartment unit, so that they will develop coping mecha-
nisms that will enable them to function, as independantly as possible,
in other standard accomuodation situations. This forms an important
part of the normalizing process. Instead of relying on spec' 11
built-in features, we emphasize the help of an occupational thera-
pist to develop simple adaptations and teach specific types E ma-
nouvers to increase individual functioning.
So far, WE have found no major short-comings in this type of approach,
and we have noted an improved self-inage of the residents because
they are pleased that they are living and coping in a stand rd fa-
shion. They are also finding that they gradually come to d more
and more for themselves, and are amazed by their own increased
abilities and strengths. Though originally many feared the espon-
sibility of having to deal with financial independance and it: pro-
blems, they are all managing well, whether they receive study grants,
welfare, salaries or other income. All are proud of their ac Leve-
ments and life-style, and as a result they have B high self-e teem.
In the orientation of the demonstration project, Projet. Norms sation
has continually resisted the desire to satisfy, in & band-nid Teshion,
the immediate needs of the disabled population because it is our be-
lief that "special" housing solutions are too often only one-shot
deals and provide only short-term relief.
In its stead, the objectives of Projet Normalisation his ve been to
implant long-term, government supported solutions to the housing and
service needs of the disabled, 50 that 8 natural availability of these
resources will be assuredin the future for all who require them.
These kind of objectives demand & more difficult and time consuming
process, because they require the esopuration of the many additional
which have jurisdictionovez the mary different I2 juirements make
up "incograted housing". He do DCC secopt that the representatives
of the public sector ignore their responsibilities VIS à the
disabled portion of the total population which they are mandated to
serve.
6
But in conclusion, it is important again to focus attention on the
disabled individuals themselves. The success of Projet Normalisation
is its emphasis in stressing that the creation of integrated housing
resources puts the responsibility of living on the individuals them-
selves. It is up to them to utilize those measures which have been
provided for their use. This method of helping disabled persons help
themselves must be the ultimate goal of all those who are truly
working on behalf of the disabled population.
Patricia Falta, M. Arch.
Environmental Designer
January 10, 1977